Tag Archives: Sue Thoms

From tent to table

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Think fun and healthy for your next outdoor adventure. (Courtesy Spectrum Health Beat)

By Sue Thoms, Spectrum Health Beat


Camping trips brim with healthy fun.


We hike, swim and paddle. We run until we’re breathless.


We get close to nature, inhale fresh air and gaze at the stars.


All those outdoor activities require fuel. And with a little planning, the camping menu can be just as healthy—and fun—as a day at the beach, says Angela Fobar, RDN, a Spectrum Health dietitian.


A mom with three young children, Fobar has spent many nights at campgrounds with her family, both in a tent and a camper. They roast marshmallows over the campfire and eat their share of s’mores.


But as a dietitian with Spectrum Health Zeeland Community Hospital, Fobar also looks for ways to eat healthy on vacation. In her pre-trip grocery shopping, she opts for kid-friendly foods that deliver good nutrition.


And simplicity is key.


“It’s camping,” she said. “You want to spend your time relaxing, hanging out and doing activities—and not spend an hour making an elaborate meal.”


She shared three tips for keeping nutrition on track, even when you’re sleeping in a tent or camper.

One-pot (or packet) meals

“We like to cook a lot of our meals over the fire,” Fobar said. “To do that, I think, takes a little planning.”


She creates foil packets that combine some form of protein—chicken or shrimp, for example—with assorted vegetables, olive oil and spices.


A favorite packet dinner combines turkey sausage with potatoes and green beans. You can vary the spices, adding Italian seasonings or a fajita flavor.


“I think that’s the fun of it,” she said. “You can mix and match whatever you want.”


The ingredients can be cut and prepared at home before the trip. You can assemble the packets at home or at the campground. (Combinations suggested below.)


And if you don’t want to make individual servings, you can combine the ingredients in a cast-iron skillet and cook the dinner over a fire.


If she uses a camper and has an electric hookup, Fobar often prepares one-pot soups and stews in a Crock-Pot.


This recipe for Six-Can Tortilla Soup, found on allrecipes.com, works especially well for a camping trip because the ingredients don’t require refrigeration. The tasty soup combines canned chicken with beans and other ingredients.


Because some canned goods are high in sodium, she advises looking for salt-free or low-sodium options.

Fire-grilled pizza

Using a cast-iron pizza pan over a campfire, Fobar makes pizza dinners that her family calls “hobo pies.”


Using bread as the crust, they layer pizza sauce, cheese and a variety of toppings. She usually makes hers meatless, but the toppings available can vary with a family’s tastes.


“It’s fun because the kids get involved,” she said. “They can choose whatever ingredients they want to add.”

Fruits and veggies

Even when camping, you can still get at least five servings of fruits and vegetables a day, Fobar says.


“I like to cut up fruit ahead of time so I have tubs of fruit available,” she said.


She also keeps a tub of veggies on hand. Often, she chooses ones that require no prep—carrots, baby tomatoes, sugar-snap peas.


Having a stockpile in the cooler or a camper fridge makes it easy to add fruits and veggies to every meal.

Packet meal recipe

Use one of these combinations for a one-pot or foil packet meal. Or feel free to vary them and concoct your own.

  • Turkey sausage or kielbasa, red skin potatoes, onion and green beans. Season with salt, pepper, garlic and rosemary.
  • Apple chicken sausage, sweet potatoes, red onion and Brussels sprouts. Season with salt, garlic, thyme and cinnamon.
  • Chicken, onion and red, yellow and green peppers. Add fajita seasonings.
  • All veggie: broccoli, carrots, cauliflower, cherry tomatoes, onion and summer squash. Season with salt, pepper, garlic and rosemary or thyme.

Directions

Prep for packets can be done while camping or at home and taken to the campsite in your cooler or fridge.


Think size when cutting your items. Items that take longer to cook can be cut smaller than items that cook in a shorter time.


Assemble packets. You will need a square of foil, 12 by 12 inches, for the top and bottom of each packet.


Build with desired chopped ingredients.


Add olive oil—2 tablespoons per packet, to prevent sticking.


Add seasoning.


Fold each side of the packet two or three times to make sure they are secure when flipping over the fire.


Cook on a grate or grill over a bed of hot coals for about 40 minutes. Check the temperature of any meats with a meat thermometer prior to serving.


Reprinted with permission from Spectrum Health Beat.



Does dementia run in your family? Take a brain test

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It’s not all in your genes. Research underscores the important role that lifestyle decisions play in shaping the trajectory of your brain health. (Courtesy Spectrum Health Beat)

By Sue Thoms, Spectrum Health Beat


Researchers looking to trace the genetics and risk factors for Alzheimer’s disease put out a call: Volunteers needed to take a short online memory test.


Celebrities such as Ashton Kutcher, Lynda Carter and Valerie Bertinelli spread the word on social media. Soon, thousands of people signed up to match word pairs on the MindCrowd test.


With more than 59,000 tests completed, the researchers at the Translational Genomics Research Institute in Arizona analyzed the results.


On average, adults 18 to 65 who had a family member with Alzheimer’s scored lower than those who did not.


The study suggests those who have a higher risk of developing Alzheimer’s because of family history may show changes in memory performance as early as their 20s, say the researchers.


More than 115,000 people have now taken the test, which is still online.


Researchers aim for a pool of 1 million participants, creating a set of data about how people without Alzheimer’s perform on the test, based on age, gender and various demographic and health factors.

Take results in context

The study, published in the journal eLife, may spark intriguing questions about who is at risk for the memory-impairing disease—but it is far from a diagnostic test, cautions Timothy Thoits, MD, the division chief of neurology with Spectrum Health Medical Group.


Thoits, a specialist in memory disorders, said neuropsychologists administer a number of tests to diagnose Alzheimer’s.


One test resembles the one used in the MindCrowd research. It asks participants to learn word pairs and then tests how well they can recall the missing half of each pair when one word is presented.


For example, a word pair may be “fan and vase.” When prompted with the word “fan,” the participant fills in the missing word, “vase.” (These words are not from the actual test.)


But someone undergoing testing for dementia would undergo many other tests—covering abilities such as attention, visual and spatial perception, judgment, processing, recall and retention.


Neuropsychologists’ testing also measures whether the patients are giving a good effort. This is crucial because depression, anxiety and other factors can affect whether people give it a full effort.


“Memory loss has to be taken in context—what’s going on in your life, what medications you are exposed to, any other medical illnesses,” Dr. Thoits said.


He encouraged anyone concerned with their results on the test—or memory issues in general—to talk first with a primary care doctor.


The researchers, in discussing the results of the study, stressed the value of a healthy lifestyle in helping to reduce the risk of dementia.


Neuropsychologists generally divide recommendations into three age groups, Dr. Thoits said.

Early life

Stay in school.


“People with a high education build up what we call cognitive reserve,” he said. “We think they can get along longer even though they may be having trouble, because of that high intelligence.


“For somebody with a lower cognitive reserve, minor deficits come to the forefront sooner.”

Midlife

Address health risk factors linked to an increased risk of dementia, including high blood pressure, obesity, diabetes, smoking and hearing loss.


Although hearing loss gets little attention as a risk factor, research shows the link to be significant.


A recent study of more than 16,000 people in Taiwan found those diagnosed with hearing loss between 45 and 64 years of age were at higher risk of developing dementia in coming years. The findings suggest that hearing protection, screening and treatment might reduce that risk factor, the researchers say in the study published in JAMA Network Open.

Later life

Physical inactivity, social isolation, hypertension and depression all raise the risks of dementia for older adults.


Dr. Thoits encourages people to socialize and remain physically and mentally active. Suggestions include:


Take a lifelong learning course at a local college.


Do crossword puzzles and other fun games, including those offered free online at Games for the Brain.


Each day, get 30 minutes of aerobic exercise a day—make it a heart rate-boosting, sweat-inducing session.

Lifelong

In general, Dr. Thoits advises paying attention to four areas of life: Stay active physically, mentally and socially and follow a Mediterranean diet, with its emphasis on fruits and vegetables, fish, legumes, poultry and whole grains.


He does not advise taking supplements that claim to prevent dementia.


“One multivitamin a day is all we recommend,” he said.


Reprinted with permission from Spectrum Health Beat.




‘This is an epidemic’

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Photo by Chris Clark, Spectrum Health Beat

By Sue Thoms, Spectrum Health Beat


Rob Buitendorp didn’t worry much about the little lump he found on his neck, behind his right ear.


It didn’t hurt, didn’t get in the way. He had no problems swallowing or speaking.


But he had a doctor’s appointment in three weeks, so he decided to ask about it then.


He is so glad he did.


Buitendorp, a 73-year-old retired insurance adjuster, is one of the growing number of people diagnosed with HPV-related throat cancer. And thanks to his quick reaction, he benefited from early detection and treatment.


“If the cancer is detected early, then patients are more likely to have a choice of effective cancer treatments,” said Thomas O’Toole, MD, a Spectrum Health head and neck surgical oncologist.

Danger often goes unrecognized

Oropharyngeal cancer—cancer in the back of the throat—strikes more than 18,000 Americans a year, according to the U.S. Centers for Disease Control and Prevention.


It is the most common HPV-associated cancer in the U.S.—more common even than cervical cancer. But the lack of awareness about the disease hampers efforts to combat it.


“This is an epidemic,” Dr. O’Toole said. “It can happen to basically anybody and it’s the scariest thing. It really strikes middle-aged healthy people out of the blue.”

Photo by Chris Clark, Spectrum Health Beat

Early detection is key to surviving—or suffering fewer physical effects. But the earliest signs often go unrecognized by patients and, sometimes, even by doctors, Dr. O’Toole said.


The most common early symptom patients notice is a painless bump on the neck. A sore throat is the second most common sign. Too often, people wait months, hoping the problem will go away, before they seek medical care.


“If you have a bump on your neck and it’s been there for more than two weeks, you should go to your doctor, even if you don’t feel any other symptoms,” Dr. O’Toole said. “The quicker we get a diagnosis, the quicker you can get treatment, which is important in terms of improving patients’ survival.”


He recommends the HPV vaccine to prevent the cancer from occurring.


The Food and Drug Administration initially approved the vaccine for youths age 9 to 26 years. But in October 2018, it expanded the approved use of the vaccine to include men and women age 27 to 45 years.


“Because HPV-related cancers may develop decades after exposure to the virus, it may be a while before we see the impact of the vaccine on the incidence of oropharynx cancer,” Dr. O’Toole said.

Cancer rates on the rise

In the 1980s, the medical community began identifying problems with throat cancers related to the human papillomavirus, or HPV.


As smoking became less popular, the incidence of most head and neck cancers declined, as expected. But one form began to show up more often—cancer of the oropharynx.


If you open your mouth and look in a mirror, you see much of oropharynx at the back of your throat. It includes the tonsils, the base of the tongue, soft palate and the back wall of the swallowing passage.


Long before Buitendorp’s diagnosis, lab analysis of oropharynx cancers began to find evidence of a virus in the tumors. They identified HPV in 15 to 20 percent of tumors in the 1980s, and in 80 percent of tumors by 2004.

Photo by Chris Clark, Spectrum Health Beat

HPV viruses, which can be sexually transmitted, are common and doctors believe many people have been exposed to them.


“It’s only rare that people end up with cancer from it. It’s something we don’t fully understand—who’s going to develop cancer,” Dr. O’Toole said.


Treatments for cancer of the oropharynx include surgery, chemotherapy and radiation.


“We try to identify what we think is going to be the most effective treatment for the patient with the fewest side effects,” Dr. O’Toole said.


To reduce delays in diagnosis of throat cancer, the American Academy of Otolaryngology-Head and Neck Surgery has developed a clinical practice guideline for evaluation of adult patients with a neck mass, Dr. O’Toole said.


“They recommend that when adult patients have a neck mass for more than two weeks or of uncertain duration without signs of infection, there should be an examination of the upper aerodigestive tract, including the oropharynx and larynx,” he said. “This usually will require referral to an otolaryngologist.

“Dr. O’Toole’s office called and said this is something that should be seen immediately.”

Bob Buitendorp

When Buitendorp’s internist looked at the lump on his neck in February 2018, he recommended seeing an otolaryngologist. He gave him the phone number for Dr. O’Toole.


When he arrived home, Buitendorp discussed it with his wife, Ruth. He figured he would follow up on the advice—eventually—but he wasn’t worried. The bump was painless.


“In my family, we have a problem with procrastination,” he added.


Fifteen minutes later, a phone call surprised him.


“Dr. O’Toole’s office called and said this is something that should be seen immediately,” he said.

Photo by Chris Clark, Spectrum Health Beat

At the first appointment, Dr. O’Toole examined Buitendorp’s throat and showed pictures of a suspicious area on the right tonsil.


“He showed me a growth on the inside that was directly related to the external growth,” Buitendorp said.


Dr. O’Toole performed a fine needle aspiration biopsy in the office. Later, in an operating room, he performed a biopsy of the tonsil, which confirmed an HPV-related cancer.


In March, Buitendorp underwent surgery at Spectrum Health Butterworth Hospital.


Dr. O’Toole performed the operation with the use of the da Vinci robot. The minimally invasive procedure is performed through the mouth. He made only one incision a few inches long in the neck to remove lymph nodes.


The minimally invasive approach makes recovery easier, he said.


A more traditional approach could involve cutting the jaw in half and opening the face like a book. Or a surgeon might make an incision across the neck and take apart the muscles that attach the voice box to the jaw.


“All those things disrupt the muscular attachments,” he said.


He advises patients considering surgery to get an evaluation by a surgeon who can perform a minimally invasive operation.


Dr. O’Toole removed the tumor, which affected the back of the tongue, tonsil and throat. And he removed 66 lymph nodes.


Buitendorp spent five days in the hospital recovering.


“Everything went better than I ever expected,” he said. “I was talking the first day.”

Caught at an early stage

The pathology report showed he had a stage 1 tumor. But because cancer was found in two lymph nodes, he also underwent 30 sessions of radiation therapy at the Spectrum Health Cancer Center at Lemmen-Holton Cancer Pavilion.


After the surgery, Buitendorp didn’t eat for a week. He lost 25 pounds.

Photo by Chris Clark, Spectrum Health Beat

In the year since then, he has worked with speech therapists to regain the ability to eat a variety of foods. He takes small bites and eats slowly.


“I’m also getting my taste buds back slowly,” he said.


The post-surgery weight loss is common, Dr. O’Toole said.


“Most people can expect to lose 10 to 20 percent of their body weight,” he said.


Buitendorp knows the cancer or the treatment could have taken a far greater toll without quick treatment.


“This could have been serious if I had not said something to (my doctor),” he said. “That is the key. If you see something wrong, talk to your doctor.”


Reprinted with permission from Spectrum Health Beat.




Are boomers embracing hearing aids?

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“Baby boomers are a lot more willing to embrace hearing aids than their elders were,” said Debbie Youngsma, AuD, CCC-A, an audiologist with Spectrum Health Medical Group. “They are into their smartphones. They are into all that technology. And hearing aids are smart.” (Chris Clark, Spectrum Health Beat)

By Sue Thoms, Spectrum Health Beat


There long has been a big gap between the number of people with hearing loss and those willing to wear a hearing aid.


But tech-savvy baby boomers just might be the ones to narrow that gap.


“Baby boomers are a lot more willing to embrace hearing aids than their elders were,” said Debbie Youngsma, AuD, CCC-A, an audiologist with Spectrum Health Medical Group. “They are into their smartphones. They are into all that technology. And hearing aids are smart.”


The number of people with hearing loss is growing as rapidly as hair is graying in the baby boomer population.


According to a recent federal report, 17 percent of Americans—1 in 6—say they have trouble hearing. Not surprisingly, the number increases with age. Forty-three percent of those over 70 report hearing loss.


Those self-reported numbers likely don’t capture the full picture, Youngsma said.


People don’t always recognize when they have trouble hearing. Why? The loss may occur too gradually to notice. They may have never had their hearing checked. Or they could be in denial.


“Less than 21 percent of those with hearing impairment are wearing hearing aids,” she said.


Those who do get hearing aids wait an average of seven to 10 years to seek help. That’s a lot of missed conversations.


Accepting the technology can mean a big difference socially and emotionally, Youngsma said.


“Untreated hearing loss usually results in isolation and withdrawal from social situations,” she said. “They can get depressed, frustrated and lonely.”


“Obviously, the earlier you get (hearing aids), the easier it’s going to be to adjust and get back into the world of hearing.”

Tired of saying, ‘What?’

Rochelle Morris, 52, said she didn’t realize how much she missed before she got hearing aids two years ago.

She traces problems with her left ear to a car accident in 2004, when the air bag deployed and slammed into the left side of her head.


She started noticing problems hearing about five years ago. She often asked co-workers or family members to repeat something. She missed the punchlines of jokes.


“I felt myself not doing things because I didn’t want to say, ‘What?’ or ‘Say that again,’” she said.


Morris resisted the idea of wearing hearing aids—until she saw how small and unobtrusive they are.


“I pictured an old person and was really kind of embarrassed about it,” she said. “I didn’t need to be, because you don’t even notice it.”


Within a couple of days, she embraced the technology.


Youngsma said she is encouraged to see the stigma waning, particularly among the young baby boomers.


Many are still in the workforce, and communication is crucial to performing their jobs. They also are more likely than their elders to see a hearing aid as just one more technological device—to add to their tablet, laptop, smartphone, Kindle, FitBit or Apple Watch.


They can even use their smartphones and tablets to change the settings on their hearing aids.


“You can act like you’re texting while you’re changing what the hearing aids are doing,” she said.


For Morris, hearings aids opened up a world of sounds she had missed—from the wind blowing through the trees to conversations with her husband, Brian, and their children, Anna and RC.


And when she could hear better, her balance improved.

Causes of hearing loss

Injuries, like the one Morris sustained, are one of several causes of hearing loss, Youngsma said. Others include aging, ear infections, cancer treatments and exposure to noise—either cumulative or one loud burst.


And remember when your parents would tell you to turn down your music? Well, they were on to something. Going to loud concerts, or listening to loud music with ear buds, can take a toll on your hearing.


Impacted ear wax also can cause temporary problems with hearing.


“Hearing loss is the third most common complaint, following hypertension and arthritis, in older adults,” Youngsma said.


Reprinted with permission from Spectrum Health Beat.


Top 10 reasons to exercise 30 minutes today

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Just 30 minutes of exercise five times a week can keep you in good health. (Courtesy Spectrum Health Beat)

By Sue Thoms, Spectrum Health Beat


Just give it 30 minutes―exercise, that is.


Federal health guidelines urge us to spend half an hour each day moving with enough vigor to boost the heart rate. But half the U.S. population fails to squeeze in time for it.


To encourage us to make exercise a priority, Thomas Boyden, MD, a Spectrum Health Medical Group preventive cardiologist, details the many ways physical activity can make our lives better.


His top 10 reasons to exercise can provide a little motivational boost to put down the smartphone and pick up the pace.


Routine exercise:

  • Lowers blood pressure
  • Lowers blood sugar
  • Helps control cholesterol
  • Builds bone strength
  • Helps prevent dementia
  • Fights depression, stress and anxiety
  • Improves balance
  • Reduces risk for heart attack and stroke
  • Aids weight control
  • Helps you sleep better

Exercise does not have to mean running a marathon, Dr. Boyden said. But it should involve activity more vigorous than a leisurely stroll.


“I say walking the dog doesn’t really qualify as exercise,” he said. “I have a dog and I know how often they stop.


“We want the heart rate to increase and we want it increased for sustained periods of time. That’s proven by research to lower your risk of events like heart attack and stroke.”


Those with physical limitations, because of weight, arthritis or other health issues, can still be active, he added.


“Particularly when you get older and have joint problems, I encourage people to figure out ways to do seated exercises, so they can take the weight off the joints and exercise without pain,” he said.


The Centers for Disease Control and Prevention advises people to exercise at least 150 minutes a week (two hours and 30 minutes). Doctors often recommend breaking it into 30-minute sessions because it sounds less daunting, said Dr. Boyden.


“It’s possible and usually easy to do 30 minutes of anything,” he said.

Sedentary sickness

More than 70 percent of Americans are overweight or obese, which can lead to a number of health problems, Dr. Boyden said. These include:

  • Diabetes and high blood pressure, which can lead to cardiovascular disease
  • Increased risk of cancer, blood clots, depression and early-onset dementia
  • Problems with menstruation
  • Gastrointestinal issues
  • Sleep apnea
  • Joint problems, leading to a need for hip and knee replacements

“We are getting sicker as a country because we are getting bigger and more sedentary,” he said.


Excess weight and a sedentary lifestyle drive heart disease, which is the No. 1 killer of both men and women, according to the CDC.


“The strongest data shows if we all maintained a healthy weight, ate healthy, did just a little bit of exercise and didn’t smoke, at least 80 percent of our country would likely never have a heart problem,” Dr. Boyden said.


“I’m a big lifestyle advocate,” he said. “Everything we do for ourselves is as meaningful, if not more meaningful, than the services provided by a health care system.”


Reprinted with permission from Spectrum Health Beat.


It’s a fall thing: Time for flu shots

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Make your plan today to keep the flu at bay this season. (Courtesy Spectrum Health Beat)

By Sue Thoms, Spectrum Health Beat


Bake an apple pie. Admire colorful leaves. Sip a pumpkin spice latte.


And roll up your sleeve for a flu vaccine.


If you include that quick shot in the arm in your autumn traditions, you boost your odds of avoiding influenza in the chilly months to come, says Rosemary Olivero, MD, a pediatric infectious disease specialist with Spectrum Health Helen DeVos Children’s Hospital.


“Even normally healthy people can get severe influenza,” she said. “You can still get hospitalized. You can still get secondary bacterial pneumonia.”


And vaccinations community-wide can protect those at greatest risk from influenza, particularly babies who are too young for the vaccine.


“Our very young and our very old are always going to be at the highest risk for severe influenza,” she said.


Also at high risk: pregnant women, people with suppressed immune systems or chronic conditions such as asthma and heart disease.


How bad will the flu season be?


“It’s really difficult to know,” Dr. Olivero said. “It has a lot to do with climate and how waves of viruses move throughout the country.”


Michigan’s flu season typically peaks after the winter holidays and sputters out by April.


Last year, the peak hit about two months late. And the flu season lingered much longer.


“It was very unpleasant,” Dr. Olivero said.


Now is the time to get the vaccine, she added. The Centers for Disease Control and Prevention, along with four other global agencies, adjusted this year’s flu vaccine to better match the influenza strains expected to circulate in the U.S. Health officials changed the two A antigen components and left the two B virus components unchanged.


“But even if the flu vaccine is not perfect and doesn’t prevent 100% of influenza cases, it can still prevent thousands of hospitalizations,” Dr. Olivero said. “That’s a big win, too.”


If you get the vaccine—and end up getting the flu—the illness likely will be less severe and of shorter duration.


In the 2018-19 influenza season, the overall vaccine effectiveness was 38 percent and yet it still paid big benefits, according to a study published in Clinical Infectious Diseases. It prevented:

  • 7.1 million illnesses
  • 109,000 hospitalizations
  • 8,000 deaths

Studies by CDC researchers, published in Healio, found in recent years that flu vaccines:

  • In children, reduced the risk of influenza-related hospitalization by 50%.
  • In adults, reduced the odds of severe outcomes, including death, by 36%.

Some people mistakenly think the vaccine can make them sick, Dr. Olivero added.


“Getting the flu vaccine does not give you the flu,” she said.

Courtesy Spectrum Health Beat


You might experience a short-lived fever, feel run down or have a sore arm at the site of the injection. But that’s not because you have influenza. Those effects are signs of your immune system revving up.


“It’s normal and expected—and it’s way better than getting the flu,” she said.

Which vaccine

The CDC recommends flu vaccines for everyone 6 months and older.


Those 2 to 49 years old can receive the vaccine in a nasal spray called FluMist. But the American Academy of Pediatrics recommends injections as the primary choice for children.


“The shot is more effective, so that’s our first recommendation,” Dr. Olivero said.


Two vaccine options are designed for people 65 and older:

  • Fluzone High-Dose, which contains four times the antigens of a standard vaccine
  • Fluad, a standard-dose shot with an added ingredient designed to produce a stronger immune response.

If the flu strikes

The flu often comes on suddenly, causing a cough, sore throat, runny nose, headache and body aches. It can also cause a fever, but that is not always the case, the CDC says.


Most people recover in a few days to up to two weeks. But some develop complications such as pneumonia, which can be life-threatening.


For those who do get influenza, Dr. Olivero advised taking the antiviral drug Tamiflu, also known by its generic name, oseltamivir.


“Folks have been timid about the use of the antiviral drug,” she said.


A study shows the medication, if taken within 48 hours of first symptoms, can shorten a bout of influenza by a day. That may not sound impressive to some.


But she and other infectious disease doctors believe many benefit from it.


“If your husband is diagnosed with influenza and you get ill two days later, which is very typical, you could take (Tamiflu) the same day,” she said. “Most of us would say it turns the illness around extremely quickly, but that’s not captured in medical studies.”


Early treatment is especially important for those with chronic medical conditions.

Preventing the flu

In addition to getting a flu vaccine, the CDC recommends everyday steps to help stop the spread of influenza:

  • Stay away from sick people.
  • Wash your hands regularly to prevent the spread of germs.
  • If you get the flu, stay home from work or school.

Check out the Flu Information Center for local flu vaccine clinics near you, or to call the Flu Help Line at 616.486.3939.


Reprinted with permission from Spectrum Health Beat.



Which milk is the cream of the crop?

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The definition of milk continues to evolve to include new blends and fresh flavors. But is it better? (Courtesy Spectrum Health Beat)

By Sue Thoms, Spectrum Health Beat

 

Moooove over, Bessie. Cow’s milk has lots of competition.

 

You can fill your glass with a milk-like beverage made from hemp, coconut, cashews, macadamia nuts, oats, peas, flax, sunflower seeds or quinoa.

 

And the longtime favorites―soy, rice and almond milks―occupy more and more space on store shelves.

 

In the past few decades, the growth in milk alternatives has cut into Americans’ dairy milk consumption. Cow’s milk sales have dropped to half the level of the 1980s, according to the Dairy Reporter. Meanwhile, the milk alternatives market is expected to double by 2019.

 

With more options popping up, picking the right milk to pour on your cereal can be a bit overwhelming for consumers.

 

Making that choice depends on an individual’s health needs―and taste preference, says Kristi Veltkamp, MS, RD, a dietitian at Spectrum Health Blodgett Hospital.

 

“If you have allergies, that’s obviously a big driving force,” she says.

 

For those allergic to cow’s milk, nuts or soy, the growing alternatives market offers some welcome options.

 

Aside from allergies, nutritional goals should guide your choice, she says.

From the cow

When it comes to nutrition, the old standby rules.

 

“Cow’s milk by far has the most nutrition in it,” Veltkamp says. “It has protein in it. It has carbohydrates. It has fats. It has a good combination of all three macronutrients. …It’s also a good source of calcium. It has phosphorus and potassium.”

 

Nutritional guidelines call for whole milk for children from ages 1 to 2. Veltkamp recommends organic milk, free of growth hormones.

 

Consumers also should consider pastured or grass-fed cow’s milks, she adds, because in consuming an animal product, “you eat what it eats.”

 

Once children turn 2, they generally can switch to a lower fat milk.

 

Although adults have long been advised to drink low-fat milk to limit calorie and fat consumption, Veltkamp says recent research casts doubt on that practice. A 2016 study in the journal Circulation, for example, found people who consumed full-fat milk and dairy products had lower diabetes rates.

Sugars and protein

People opt for an alternative to cow’s milk for a variety of reasons―they may be lactose intolerant, allergic to milk or following a plant-based diet.

 

Typically, the plant-based alternatives are created by blending up the main ingredient with water and straining out the pieces.

 

“Then, they add a thickener. Otherwise, it would be very watery,” Veltkamp says, “Then they add vitamins. Essentially, it’s flavored water.”

 

Many plant-based milks “are a nice low-calorie option if you are trying to watch your calories or your carbs,” Veltkamp says.

 

But stick with an unsweetened version, she advises. The flavored versions of popular drinks, like soy and almond milk, can deliver more sugar and calories than cow’s milk.

 

And remember to check the nutrition facts. Rice milks typically are relatively high in carbs.

 

Milk produced by cows does contain lactose, a naturally occurring sugar. But that differs from the sugar added to sweetened milk alternatives.

 

“It is processed differently in the body,” Veltkamp says.

 

Most of the alternatives have little protein―just a gram or 2 per serving. For those looking for a higher protein content, soy milk and pea milk are good alternatives. They contain 7 or 8 grams of protein in a cup.

Calcium and cooking

Most of the plant-based milks are calcium fortified and deliver 30 to 50 percent of the recommended daily allowance for adults.

 

If lactose intolerance poses a problem, consumers can buy lactose-free milk.

 

“They add an enzyme called lactase, and it breaks down the lactose in milk,” Veltkamp says. “It’s kind of like it’s predigested.”

 

Despite the thinner consistency, Veltkamp says milk alternatives work well in recipes.

 

“I use almond milk in any recipe that calls for milk, and I don’t have any issues,” she says.

 

Reprinted with permission from Spectrum Health Beat.

 

 

 

 

The little fighter

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By Sue Thoms, Spectrum HealthBeat; photos by Chris Clark

Like most babies, Ollie Lott came into the world crying, wiggling and naked as God made him.

But he brought something extra also—a coiled tube stuck out of the pale pink skin of his little belly.

The catheter, surgically implanted 14 weeks earlier, helped him overcome a birth defect that could have been fatal.

“It’s amazing,” said his mother, Kimberly Lott, as she cuddled Ollie, now a cooing and smiling 10-week-old baby.

“I didn’t know any of this stuff existed. I didn’t know people could do surgeries on babies while they were in the womb.”

The procedure certainly is rare—as is the birth defect, said Vivian Romero, MD, a Spectrum Health maternal fetal medicine specialist.

For Ollie, timing and technology came together to make possible the operation, and its happy outcome.

Ultrasound reveals a problem

Kimberly and her husband, Anthony, had no clues of the drama ahead as they prepared for the birth of their second child. They looked forward to welcoming a younger sibling for their 5-year-old son, Elliott.

At 20 weeks, Kimberly had a routine ultrasound near her home in Holland, Michigan. Because the baby’s kidneys and bladder were enlarged, Kimberly’s doctor referred her to the maternal fetal medicine specialists at Spectrum Health.

A few days later, the Lotts visited Dr. Romero and she performed another ultrasound. It, too, revealed enlargement of the bladder, kidneys and the ducts that connect the two.

“It looked like the baby had an obstruction, most likely below the bladder,” she said.

That tiny piece of plastic saved his life.

Kimberly Lott
Ollie’s mother

It was hard to get a detailed picture. A developing baby generally floats in amniotic fluid, which aids visualization of the anatomy. But in Ollie’s case, there was essentially no amniotic fluid. Dr. Romero could not even see if the baby was a boy or girl.

Photo by Chris Clark, Spectrum HealthBeat

The lack of fluid can lead to damage of the urinary tract, kidneys and lungs.

“The baby releases urine to the amniotic cavity, and then the baby swallows and breathes the fluid, allowing the lungs to develop,” Dr. Romero explained. “Low amniotic fluid can result in underdevelopment of the lungs—pulmonary hypoplasia, a life-threatening condition.”

In the early stages of pregnancy, the placenta creates the amniotic fluid. The kidneys take over the job after week 17.

By retaining urine, the blockage in Ollie’s bladder disrupted that cycle. Later tests showed he had posterior urethral valves, which means he had extra flaps of tissue in the tube through which urine leaves the body.

The rare condition occurs in 1 in 8,000 to 1 in 25,000 live births of baby boys, said Alejandro Quiroga, MD, a pediatric nephrologist with Spectrum Health Helen DeVos Children’s Hospital.

Depending on the degree of the obstruction, the condition can be fatal.

‘We will try it’

The Lotts, reeling from the news of their baby’s prognosis, struggled to comprehend the options laid out for them. They could wait and let nature take its course, loving their child for his brief life on earth.

Or they could see if a shunt could be placed in utero in the bladder.

“It sounded kind of far-off,” Kimberly said. “I didn’t know if that was going to work. It seemed weird. But we said we will try it.”

First, they had to see if Ollie was a candidate for surgery. The maternal fetal medicine team had to make sure Ollie’s kidneys still worked and could produce urine. The surgery would not benefit him if the kidneys were so damaged they could not function.

I was so scared. I didn’t want to get my hopes up.

Kimberly Lott
Ollie’s mother

Dr. Romero performed a bladder tap, using ultrasound to guide her as she placed a long needle through Kimberly’s uterus and into Ollie’s bladder.

From that tiny sac, she withdrew about a teaspoon of urine.

Photo by Chris Clark, Spectrum HealthBeat

“I felt it. It wasn’t good,” Kimberly said. “That first bladder tap was the worst. My whole uterus contracted. I was crying. I was upset. I was swearing.”

And most difficult of all: She had to repeat the bladder tap the next day. The second test would show if the bladder filled with urine again, indicating Ollie still had functioning kidneys.

Kimberly didn’t hesitate.

“I wanted to do everything I could do,” she said.

Daring to hope

The tests showed good renal function, so Dr. Romero performed the surgery. Kimberly was 23 weeks pregnant.

Using a larger, hollow needle, Dr. Romero placed the shunt into Ollie’s grape-sized bladder.

The tube, called a pigtail catheter, curled into a loop on each end. She placed one end coiled up inside his bladder. The other end looped in a circle outside his body, along his belly.

Urine flowed through the catheter from the bladder to the amniotic sac, bypassing the blockage.

For the rest of the pregnancy, Kimberly returned for repeated follow-up tests to make sure the catheter remained in place. Babies often manage to pull them out.

With each visit, Kimberly worried about whether the shunt still worked, whether her baby was growing.

“I was so scared,” she said. “I didn’t want to get my hopes up.”

As the weeks progressed without problems, she began to be hopeful. She stopped researching palliative care options and started reading about kidney issues. A few weeks before the delivery date, she finally allowed herself to buy a few baby outfits for him.

Throughout the pregnancy, the maternal fetal medicine team also monitored the growth of Ollie’s chest.

“We were all worried about how his lungs were working,” Dr. Romero said. “We noticed his chest was growing, so we hoped his lungs were growing, too. But we wouldn’t know until the baby was born.”

They planned to induce labor at 37 weeks. But three days before the delivery date, an ultrasound showed a drop in fluid levels. The catheter was not visible on the scan. The maternal fetal medicine specialists decided to deliver him that day.

That night, Dr. Romero performed a C-section, and Anthony Oliver Lott was born. He weighed 6 pounds, 15 ounces.

“He came out and just started wailing,” Kimberly said. “It was such a relief to us.”

Photo by Chris Clark, Spectrum HealthBeat

On his belly lay the coiled catheter that had been so elusive on the last ultrasound.

“Everyone was pointing at it and saying, ‘There it is! It’s in there,’” she said.

It didn’t take long to see it was still doing its job.

Ollie’s lungs managed to avoid major damage. In the children’s hospital neonatal intensive care unit, he didn’t need to be on oxygen.

His kidneys sustained major damage, but that had been expected.

‘We can deal with that’

Kimberly gave Ollie a bottle as her son Elliott played a computer game nearby. She talked about the challenges her infant son has already faced in his short life.

Five days after birth, he underwent surgery to remove the valves that blocked his urethra. Tubes were placed in his kidneys to drain urine from them. And he had a port placed so he can have dialysis in the future.

He will need a kidney transplant eventually. Kimberly hopes she will be able to give him one of hers.

He also has a feeding tube to make sure he gets enough nutrition. Children with kidney disease often have poor appetites, Kimberly explained.

Ollie’s health challenges don’t faze her. She just marvels at her son’s bright eyes and alert gaze, his wiggly arms and legs, his sweet smile.

“When he came out and all that was really damaged was his kidneys and urinary tract system, I said, ‘This is manageable. We can deal with that.’ There’s lots of kids in the world who have kidney disease and they are fine.”

She looks to his future with hope.

“He’s a little fighter,” she said. “He has been since the beginning.”

Photo by Chris Clark, Spectrum HealthBeat

She opened a small bottle and tapped out a plastic tube, curled at both ends: the catheter that had been implanted in utero.

“It saved his life,” she marveled. “That tiny piece of plastic saved his life.”

Ollie’s progress is also deeply rewarding to his physicians.

“This is why you go into medicine, because you want to save lives,” Dr. Romero said. “You want to do good for people.”

She credited Kimberly and her doctor with seeking specialized care as soon as the problem with his bladder appeared. The timing was crucial to the success of the shunt surgery.

Dr. Quiroga praised the Lotts and their vigilance in managing Ollie’s complex health issues, during pregnancy and after birth.

“The family is awesome,” he said.

As for Ollie, he said, “He’s doing great. He’s surprising us. He’s keeping us busy but he’s doing well.”

Reprinted with permission from Spectrum Health Beat.

30 days without sugar? Sweet!

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“I loved sugar, and I still do,” says Kelsey Haynes, a community relations specialist for Spectrum Health. (Photo by Taylor Ballek, Spectrum Health Beat)

By Sue Thoms, Spectrum Health Beat

 

Could you go a month without sugar?

 

No candy or cookies. No soda pop. No hazelnut syrup in your coffee.

 

The idea filled Kelsey Haynes with dread at first. A self-described “sugar addict,” she didn’t know how she could give up her sweet ways.

 

But three weeks into a sugar-free challenge, she likes the results. She’s lost a few pounds. She feels energized. She has broken her afternoon candy-jar habit.

 

“I loved sugar, and I still do,” she says. “I just don’t crave it. It’s changing my habits.”

 

Sugar-free challenges are popping up on the internet lately, urging folks to cut added sweeteners from their diets for a set period of time, as a growing number of health advocates identify added sugars as a prime culprit behind rising obesity and diabetes rates.

 

Haynes followed a suggestion from a New York Times columnist, who advised readers to try going a month without sugar.

 

Most sugar-free campaigns don’t target the sugars naturally found in fruit and dairy products.

 

They focus on the sweet stuff added to food to make our taste buds happy. Sugar lurks in some surprising places―bread, crackers, ketchup, breakfast cereal, salad dressing and pasta sauce―that don’t seem at all sweet.

 

Low-calorie artificial sweeteners are eliminated in the sugar-free challenge, as well, because they help fuel the sweet-tooth habit.

 

“A 30-day (no-added-sugar) challenge is not such a bad idea,” says Christy McFadden, MS, RDN, a dietitian and supervisor of medical nutrition therapy for Spectrum Health. “I think people can learn a lot about how much sugar is in the food that they are eating.”

 

Haynes meal preps her health lunches to bring to work. Picture above is her cauliflower rice recipe. (Photo by Taylor Ballek, Spectrum Health Beat)

The challenge requires people to read nutrition labels and discover the many ways sweeteners appear in prepared food. Instead of sugar, the ingredients might include honey, agave, nectar, molasses, cane juice or sucrose―all forms of added sweeteners.

 

“Fifty-seven things are actually sugar on a label,” McFadden says.

 

With sugar incorporated into so many foods, people can develop a preference for the sweet stuff without realizing it.

 

“We want to eat more of it or want to overeat in general,” she says. “When we go away from that for a while and make a conscious effort to avoid it, you can retrain your taste buds to prefer other foods or just not love sugar so much.”

The 10 percent guideline

Haynes, a community relations specialist for Spectrum Health, has long been interested in nutrition and fitness. She already read nutrition labels and had a good idea of the amount of sugar in food.

 

But she still struggled with a longing for sweets.

 

“When people would ask me what my favorite sugar was, my answer would be, ‘Yes,’” she says. “That sugar packet on the table―I would open it up and eat it.”

 

Eliminating added sugars helped her focus on more nutritious options.

 

“I still eat a decent amount of sugar in fruit form,” she says.

 

A typical morning smoothie consists of kale, ginger, chia seeds, kefir, a half-banana and an orange.

 

She also developed an efficient way to plan a week’s worth of meals and snacks―to keep her healthy eating plan on track. She keeps menus and matching grocery lists on file in her computer, so she can print up a list before she heads to the store.

 

McFadden says the focus on healthier foods is a key benefit of a short-term no-sugar challenge.

 

Haynes has long been interested in nutrition and fitness. With a serious sweet tooth, she wasn’t sure she could give up her sweet ways. But three weeks into a sugar-free challenge, she likes the results. (Photo by Taylor Ballek, Spectrum Health Beat)

“I think it does force you to make healthier choices for a while and be conscious of that, too,” she says.

 

Americans get 13 percent of their calories from added sugar. But they should keep it under 10 percent, according to federal dietary guidelines.

 

Going beyond that point could mean either consuming excess calories or not eating enough nutritious foods.

 

For those aiming to limit sugar intake, upcoming changes in food labels will help. By July 2017, the Food and Drug Administration will require manufacturers to list added sugars on the labels for most foods. The labels must state the amount of sugar in grams and as a percent of daily calories.

 

The ultimate goal of a no-sugar challenge should not be to avoid all types of sugar forever, McFadden says. It should be to develop a healthy diet―one that includes fruits, vegetables, whole grains and lean proteins.

 

“Milk, yogurt and fruit have a lot of natural sugars. It’s not a pure evil,” she says. “But they come with all these other nutrients. In soda pop, there’s nothing there except sugar.”

 

Reprinted with permission from Spectrum Health Beat.

‘When she’s happy, I’m happy’

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By Sue Thoms, Spectrum Health Beat

Photos by Taylor Ballek, Spectrum Health Beat

 

Alyssa D’Agostino can endure a lot: a battle against breast cancer, then leukemia, then a relapse of leukemia.

 

But when she realized she would not be home for her daughter Gianna’s ninth birthday—that drove her to tears.

 

“We have to do something.”

 

Katie Celentino heard that message over and over again from staff members at the bone marrow transplant unit at Spectrum Health Butterworth Hospital, touched by D’Agostino’s sorrow.

 

And so they did. In 24 hours, they pulled together a purple unicorn party that left Gianna nearly speechless.

 

The little girl burst into the staff room for the party with a big “Oh!” as she whirled around, taking in the birthday banner, a unicorn drawing on the whiteboard, party hats and a table brimming with colorfully wrapped presents. Nurses and nurse technicians greeted her with a lively round of “Happy Birthday!”

 

D’Agostino sat beside her daughter, eyes sparkling above her yellow face mask. She wore her party attire, a green tinted wig and a headband decorated with a silver unicorn horn and peach flowers.

 

“This is so amazing,” she said. “I’m blown away big-time.”

 

Diagnosed with breast cancer in 2015, D’Agostino underwent surgery and chemotherapy and emerged a survivor.

 

Photo by Taylor Ballek, Spectrum Health Beat

In July 2017, she learned she had acute myeloid leukemia. It went into remission, but resurfaced in April 2018. Again, she was hospitalized as she began chemotherapy treatments.

 

In late August, she went to Butterworth Hospital, with plans to get the disease back into remission so she could undergo a bone marrow transplant.

 

Five straight months in a hospital: That has been her spring, summer and autumn.

 

She hoped she would be home for Gianna’s birthday. She had gifts and planned a surprise celebration with family. When she learned that would not happen, she said, “I was devastated.”

And then, she learned a party was in the works on the fifth floor of Butterworth Hospital.

 

Celentino, the nurse manager, said staff members eagerly joined together to make the day special. Nurses came in on their day off or stayed after their shifts ended. Nurse technician Courtney Fend used her artistic skills to create a birthday banner and unicorn drawing.

 

Sharing Gianna’s big day was deeply rewarding for the staff, Celentino said.

 

“We don’t always get to see these moments,” she said. “These are the things that matter to our patients. This is why they matter to us.”

A gift of happiness

Photo by Taylor Ballek, Spectrum Health Beat

Gianna, a third-grader at Chandler Woods Charter Academy in Belmont, Michigan, came to the party with her grandmother, Alice D’Agostino. She wore her Halloween costume—a purple and black outfit with a purple wig. She dressed as Mal from the Disney movie Descendants.

 

Her mom’s gift made the outfit complete. She gave Gianna a pair of black boots, just like Mal’s.

 

Gianna bubbled with enthusiasm as she opened her gifts: sparkly pencils and coloring books, fluffy unicorn pajamas, card games, glittery nail polish, hair chalk, a jewelry box and a kit for making her own jewelry.

 

She thanked everyone and went around the room giving hugs.

 

Gianna then sat beside her mom and they wrapped their arms around each other.

 

D’Agostino said the celebration exceeded all her expectations. And seeing her daughter’s happiness was a gift in itself.

 

“I just loved seeing her face light up,” she said. “When she’s happy, I’m happy. Doing something special for her just makes me feel good.”

‘This is the good stuff’

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By Sue Thoms, Spectrum Health Beat

Photos by Chris Clark, Spectrum Health Beat

 

Emma Warner lay on the couch, sleepily watching a TV show on a tablet as her mom mixed water into a small vial of powder.

 

A tray appeared beside the couch, spread with syringes and a pair of gloves. Nine-year-old Emma didn’t even look up.

 

Her mom, Becky Warner, applied an orange antiseptic solution to the spot on Emma’s chest where a port lay beneath the skin. Into the port, she poked a needle connected to an intravenous line.

 

With a syringe, she injected saline into the line. Then came the medicine for hemophilia.

 

“This is the good stuff,” Becky said, as she slowly pressed the plunger on the syringe.

 

That good stuff—clotting factor—prevents uncontrolled bleeding that could damage Emma’s joints and cause other injuries.

 

Another shot of saline, followed by heparin to prevent clots, and the treatment was done.

 

Emma set down the tablet, yawned, and headed to the kitchen to eat breakfast with her 7-year-old brother, Gage.

She has a quick smile and charm. She is so easy to treasure.


Dr. Deanna Mitchell
Pediatric hematologist

The school-day routine, performed with a calm, antiseptic precision born of years of practice, gave no hint of the extraordinary nature of these treatments, of Emma herself.

 

To be born with severe hemophilia A puts her in a select group. And to be a girl with hemophilia is rarer still, said Deanna Mitchell, MD, a pediatric hematologist-oncologist at Spectrum Health Helen DeVos Children’s Hospital who sees children with hemophilia at the coagulation disorders clinic.

 

Photo by Chris Clark, Spectrum Health Beat

“We follow about 100 boys and young men with hemophilia, and she is my only female (patient),” she said.

 

Emma, a sandy-haired girl with a spray of freckles across her face, has made an impression, and not just because she’s the only girl in a group of boys. Her calm, easygoing nature wins over her medical team.

 

“She has a quick smile and charm,” Dr. Mitchell said. “She is so easy to treasure.”

 

The chronic condition requires vigilance and monitoring by specialists, parents and the children themselves. But research has led to improved treatments, and there is hope on the horizon, as researchers test a gene therapy for hemophilia.

Shock and fear

For Emma’s parents, Becky and Luke Warner, the diagnosis of hemophilia came without warning. They have no family history of the disorder.

 

Their first hint of a problem arose when Emma, at 13 months old, started to crawl. Large, dark bruises covered both knees, extending down into her lower leg.

 

“We knew something was not right,” Becky said.

 

Their family doctor ran blood work and Becky learned the diagnosis in a phone call: hemophilia A, or classic hemophilia.

 

Their reactions?

 

“Shock,” Luke said.

 

“Fear,” said Becky. “We didn’t know a lot about hemophilia.”

 

Photo by Chris Clark, Spectrum Health Beat

Meeting with Dr. Mitchell, they learned the disease puts a child at risk of prolonged bleeding after a cut or injury. A blow to the head could cause bleeding.

 

And often, children with hemophilia experience spontaneous bleeding in their joints, even when there is no noticeable injury. If not treated, it could cause irreversible damage to the joints over time.

 

“At 1, Emma couldn’t tell us what was happening,” Becky said. “So that part was scary.”

 

In years past, children with hemophilia often suffered such damage to their joints that, by adulthood, they needed a wheelchair or a pair of crutches for mobility. But improvements in treatments have made it possible to minimize the impact on the joints.

 

“Emma was born at a time when she has safe factor available that is completely synthetically made,” Dr. Mitchell said.

 

For Emma, a fourth-grader at Northeastern Elementary School in Hastings, Michigan, hemophilia means avoiding contact sports and activities that might lead to injury.

 

“I cannot go on trampolines,” she said. “I cannot go on snowmobiles.”

 

“She can’t do gymnastics or cheerleading,” Becky said. “At a young age certain sports are fine, like soccer. But if they become competitive when she gets older, that’s when the danger kicks in.”

 

Even with those activities off the table, Emma does plenty.

 

She golfs, swims and shoots hoops on the driveway with her brother and parents. She plays piano and recently started guitar lessons.

 

At school, she likes music class best.

 

“This year in fourth grade, we get to play recorders,” she said.

The genetic mystery

Photo by Chris Clark, Spectrum Health Beat

Through genetic testing, the Warners learned how Emma became one of the few girls with the disease.

 

About 1 in 5,000 newborn boys have hemophilia A, which is caused by a defect in a gene that codes for a protein needed for blood clotting, called factor 8.

 

The gene is carried on the X chromosome. Because girls have two X chromosomes, a girl with the genetic mutation on one chromosome usually does not have the disease. A functioning backup gene on the other X chromosome allows her to create factor 8.

 

A girl with the genetic defect is a carrier, and may pass the disease on to her sons. That’s how most cases occur.

 

But with Emma—and 30 percent of people with hemophilia—a spontaneous mutation caused the disease.

 

And in her case, the backup gene on her other X chromosome is inactive. Although rare, this issue occurs occasionally in X-linked genetic conditions, Dr. Mitchell said.

 

Kids with mild or moderate hemophilia A have low levels of factor 8. But Emma’s blood test showed no detectable amount of the protein, which means she has a severe form of the disease.

Getting used to pokes

For the first few years, Emma received infusions of clotting factor only when needed. Her parents watched for signs of bleeding in her joints.

 

Her mom recalled an incident when Emma was a toddler. She slept on a mattress on the floor, with a railing, to minimize risk of falls.

 

One morning, she woke up excited about going to day care. She jumped up eagerly, and then suddenly dropped back to the floor.

 

Worried she had a bleed in her ankle, the Warners took her to Helen DeVos Children’s Hospital. Emma got an infusion.

 

Once, when she was 3, Emma got a bump on her cheek. It swelled to the size of a tennis ball.

 

How did she handle the pokes as a small child? A shy smile spread across Emma’s face.

 

“The first couple of times, I was scared. Once I tried to bite someone,” she said. “But I got used to it.”

 

The bleeds happened more frequently as Emma grew and became more mobile. At 5, when she started kindergarten, she began to get infusions regularly, as a preventive treatment.

 

Photo by Chris Clark, Spectrum Health Beat

“I feel better sending her to school knowing she has protection,” Becky said.

 

She and Luke give the infusions to Emma every Monday, Wednesday and Friday mornings.

 

“Parents are just heroes in the world of hemophilia,” Dr. Mitchell said. “They have made it so children don’t have joint disability. They can grow up to be strong and healthy.”

 

The Helen DeVos Children’s Hospital clinic treats kids who have a variety of bleeding disorders. In addition to hemophilia A, they see children with hemophilia B, which affects 1 in 30,000 boys, and von Willebrand disease, which occurs in both genders and affects 1 percent of the population.

 

To help combat complications of the disease, the team hosts comprehensive coagulation clinics every month that allow children to see a number of providers in one visit.

 

The kids come in once a year and meet with a hematologist and review their medication doses and adjust if needed. They also see nurses, research coordinators, a psychologist, a physical therapist who measures joint mobility, and a dental hygienist who addresses ways to prevent bleeding gums.

 

Eventually, kids like Emma learn to give intravenous infusions to themselves.

 

Treatment options may change dramatically in Emma’s future, Dr. Mitchell added. Researchers are developing new medications and holding clinical trials to test a gene therapy treatment.

 

Because hemophilia often affects multiple family members, the clinical team forms ties with multiple generations of extended families.

 

“That’s very gratifying to follow families for many years and to see the progress being made,” Dr. Mitchell said.

 

Reprinted with permission from Spectrum Health Beat.

A closer look at a complex heart

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By Sue Thoms, Spectrum Health Beat

Photos by Chris Clark, Spectrum Health Beat

 

The image of Luke Carpenter’s heart seemed to float off the screen, a hologram in red and blue.

 

With flicks of a stylus, the heart moved forward, rotated left and right, and then settled back into position among the ribs.

 

For Luke, a 15-year-old from Middleville, Michigan, the virtual image matches the reality of his life.

 

For the specialists at the Congenital Heart Center at Spectrum Health Helen DeVos Children’s Hospital, it’s a roadmap that helps them plan the best way to fix what ails him.

 

The 3D imaging software, True 3D Viewer by EchoPixel Inc., is the latest high-tech tool used by the congenital heart team to understand the complex anatomy of a beating heart.

 

The physicians used scans of Luke’s heart to create the virtual image, which they consulted as they decided whether to do surgery, and how to prepare for the operation.

‘Tired pretty quick’

Luke, the son of Pam and Jason Carpenter, was born with several rare congenital heart defects, including dextrocardia, a condition in which the heart is situated on the right side of the chest, instead of the left. And he had transposition of the great arteries—which means the two major blood vessels that carry blood from the heart were switched.

 

Photo by Chris Clark, Spectrum Health Beat

By the time he entered Thornapple Kellogg High School last fall, Luke had undergone four open-heart surgeries. Surgeons patched holes in his heart, replaced the mitral valve and rerouted major blood vessels.

 

The fixes helped him grow and thrive in school and activities. He couldn’t play contact sports because of the blood thinners he took, but he loved to watch football and basketball. And he played golf and joined the high school team.

 

One day, he would like to become an athletic trainer for sports teams.

 

In the fall of his freshman year, however, he noticed difficulty in keeping up the same level of activity.

 

“I’d get tired pretty quick,” he said. “I would feel like (my heart) was beating really fast.”

 

“He was fine (when he was) resting,” his mom said. “But when he was running around the yard or doing something even mildly active, his heart would be pounding really hard.”

 

His pediatric cardiologist, Jeffrey Schneider, MD, consulted Joseph Vettukattil, MD, an interventional pediatric cardiologist and the co-director of the congenital heart center.

Pioneering a solution

The congenital heart team focused on the tube that had been placed in Luke’s heart to connect the right side of the heart to the lung arteries. A surgeon first created the conduit when he was 14 months old because he was born without a pulmonary artery. A surgeon replaced it when Luke turned 9.

 

Dr. Vettukattil examined the structure in a heart catheterization procedure. He hoped to use a balloon catheter to expand the tube and improve blood flow.

 

But he discovered the conduit lay between the heart and the breast bone, a tight spot that compressed the tube. The congenital heart team determined he needed open-heart surgery to replace the tube—and to place it in a different spot.

 

Getting a clear picture of Luke’s unique heart became crucial to planning the surgery.

 

“In a complex heart like this, when the heart is on the right side of the chest, it is important for the surgeon to orient themselves,” Dr. Vettukattil said.

 

A pioneer in 3D imaging techniques, Dr. Vettukattil used scans of Luke’s heart to create a 3D printed model, printed in a clear plastic resin.

Photo by Chris Clark, Spectrum Health Beat

Then, he contacted researchers in Michigan State University’s biomedical engineering department, who printed a model in color, using shades of blue and red to distinguish the vessels and chambers of the heart as well as part of the sternum.

 

That model also was used to create the image of the heart viewed on the Echo Pixel monitor. Wearing 3D glasses, the physicians examined the heart and its position within Luke’s chest.

 

“When you do the Echo Pixel model, you are visualizing the whole chest,” Dr. Vettukattil said. “You have a much better spatial understanding—the whole organ system of the patient is represented intact. And you are visualizing it in three dimensions.”

 

Marcus Haw, MD, pediatric heart surgeon and co-director of the congenital heart center, used the 3D images to plan the operation.

 

“As soon as I reviewed the printed model, I was able to show Luke and his parents the compressed conduit,” he said.

 

“More importantly, it showed that there was an extension of his heart cavity that would give room for a larger conduit—and that the coronary artery was not in the way of the potential route for the conduit.”

 

On April 16, 2018, he placed a new tube between the right side of the heart and lung arteries, this time routing it across the top of Luke’s heart. He also replaced the mitral valve with a larger one.

‘Means everything to us’

Two and a half weeks later, Luke arrived at the congenital heart center for his follow-up visit.

 

“You’re healing nicely,” said physician assistant Sarah Yarger, PA, as she examined the incision.

 

As he recovered from surgery, Luke said he was slowly regaining energy and appetite. He received approval to return to school the next week.

 

He hoped the new connector in his heart would make a difference. He looked forward to getting back on the golf course.

 

“I hope it will make me have more energy and able to do more things,” he said.

 

He had a chance to look at the colorful 3D model of his heart pre-surgery.

 

Photo by Chris Clark, Spectrum Health Beat

“It’s crazy,” he said, turning the heart over in his hands.

 

He pointed out the tube that lay compressed under the sternum—the one that had just been replaced.

 

For the specialists at the congenital heart center, the use of 3D imagery—including the printed model and the virtual image seen with 3D glasses—helps further the diagnosis and treatment of complex congenital heart defects.

 

“The capability to see the structures of the heart in this way is opening up new possibilities for patients who’ve previously been told there is no more we can do or that surgery is too dangerous,” Dr. Haw said.

 

The physicians continue to work on ways to better see the interrelated parts of a beating heart so they can fine-tune each patient’s treatment.

 

“That means everything to us,” Dr. Vettukattil said. “If we can use the best technology for the best treatment for our patients, that means a lot.”

 

Learn more about the nationally ranked cardiology and heart surgery care at Spectrum Health Helen DeVos Children’s Hospital Congenital Heart Center. If you would like to support this lifesaving work, contact the Helen DeVos Children’s Hospital Foundation.

 

Reprinted with permission from Spectrum Health Beat.

10 exercise tips from a pro

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Want to hike a mountain? Do a biking tour? Visualize your goals, then put a plan in writing of how you’ll achieve that dream. (Courtesy Spectrum Health Beat)

By Sue Thoms, Spectrum Health Beat

 

You resolve to exercise, with visions of a leaner, fitter, stronger you in the months ahead. You will climb that mountain, run that 5K, ski, swim, bike—or maybe just power-shop with ease.

 

How to make your grand plan stick? Here are 10 tips from Phillip Adler, ATC, manager of the Spectrum Health Sports Medicine program.

 

Make a date

If you schedule time to exercise and put it on the calendar, you are more likely to make it happen. An online calendar with pop-up reminders is an added plus. And if other people have access to that calendar, that can only increase accountability.

Use an activity tracker

It can be as simple as a pedometer or the most sophisticated Fitbit—anything that measures how much you do (or don’t do) can remind you to get moving.

Have fun

If you find activities that keep you engaged, you are more likely to come back for more. Try a group activity, like step aerobics or a boot camp class. But be conscious of the level of the class—and whether you are ready for it.

Get SMART

A SMART goal is specific, measurable, attainable, realistic and timely. For example, you might aim to progress from 20 minutes of walking to 20 minutes of running. When you set goals, it helps to begin with the end in mind and figure out the steps needed to get there.

Adopt a habit

How long it takes for a new pattern to become an automatic one varies from person to person. Researchers have floated numbers ranging from 21 to 66 days. The key is to hang in there long enough so exercise becomes the norm. Eventually, you won’t be able to imagine life without it.

Revise goals if necessary

You can make your fitness goals more difficult as you make progress. And you can loosen up a bit if you feel overwhelmed. Instead of giving up, revise and refocus. Failure is not a bad thing if we learn from it.

Don’t let soreness deter you

It’s OK to push yourself a little, and feel  achy muscles the next day. Back off if you see serious effects—like persistent swelling, a limp or an inability to reach for an object. But if you haven’t done much exercise in a while, it’s normal to feel some soreness. Keep moving the next day—use those muscles.

Hydrate

It’s important to make sure you have plenty of water, especially in the winter when the air is dry. When you are hydrated, you will have a better workout. If your lips are chapped or you can write your name on the back of your hand, you need water.

Look at the big picture

Make your commitment to exercise part of an overall healthy lifestyle. Aim to sleep better and eat a healthy diet—both will help you get the most from that time you spend at the gym.

Seek help

There are plenty of experts who can help you set up a plan that works. Be sure they have training and credentials, such as certification from the American College of Sports Medicine or the National Strength and Conditioning Association. These folks can get you moving in the right direction.

 

Reprinted with permission from Spectrum Health Beat.

Identical triplets: A rare and ‘indescribable’ joy

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By Sue Thoms, Spectrum Health Beat

 

Photos by Chris Clark

 

Oh boy, oh boy, oh boy!

 

In an instant, Julie and John VanderMolen became parents of three beautiful infants.

 

All boys.

 

All identical.

 

Statistically, that’s a rare event―identical triplets occur once in every 100,000 births.

 

And for the VanderMolens, it’s a triply blessed event.

 

The babies arrived by cesarean section Nov. 26 at Spectrum Health Butterworth Hospital, and the couple eagerly embraced the moment they became a family of five.

 

“I just was a mess of tears,” Julie says. “The pregnancy was a pretty long journey for me.

 

“Just having that bond with them in utero, and being able to feel each one of them move separately. And then to see them outside of me, it just felt so surreal. I felt like I already knew them.”

 

Ivan John arrived first, at 11:28 a.m., weighing 4 pounds, 7 ounces. Then came William Lloyd, at 11:29 a.m., tipping the scale at 5 pounds. Third was Harrison Kenneth, born at 11:31 a.m., weighing 3 pounds, 15 ounces.

 

Each has a full head of hair, and each gave a hearty cry at birth.

 

“To hear that scream―that moment is indescribable,” John says. “I am just so happy and thankful they are healthy. They are doing great now. We are just very blessed.”

One, two, three heartbeats

The couple found out they were expecting triplets early in the pregnancy. Julie had experienced a miscarriage a year earlier, so she had an ultrasound exam at six weeks.

 

“You guys are having twins,” the technician said, as she detected two heartbeats.

 

Photos by Chris Clark

A moment later, she added, “There are three heartbeats.”

 

Julie began to shake. “Like a leaf,” she says. John became dizzy.

 

“Things got real very quickly,” he says. “I just was not prepared. I felt like I had been hit by a car.”

 

It didn’t take long for shock to give way to feelings of excitement.

 

“We desperately wanted children,” Julie says.

 

Although John had lobbied for a big family, they hadn’t decided how many kids they wanted. They thought they would start with one and see how that went.

 

Doctors told the parents early in the pregnancy the infants would be identical because, although they had three separate sacs, they shared a single placenta.

 

Identical triplets can occur when a single fertilized egg divides in two, and then one of those eggs divides, said Vivian Romero, MD, a maternal-fetal medicine specialist with Spectrum Health Medical Group.

 

Julie, a social worker, and John, a former Marine who works for the federal government, are Grand Rapids-area natives who moved to North Carolina for John’s job. After they found out they were expecting triplets, they moved back to West Michigan to be closer to family.

To be able to see him and hold him is an indescribable feeling.

 

John VanderMolen
Father of identical triplets

During her pregnancy, Julie received care from the maternal-fetal medicine specialists at Spectrum Health.

 

She gained about 70 pounds and carried the babies for 32 weeks. Labor began suddenly Saturday morning.

 

“It was very unexpected,” she says. “Everything went quickly after that.”

 

William breathed room oxygen from birth. Ivan and Harrison needed continuous positive airway pressure, but only for a day.

 

Photo by Chris Clark

The three babies moved to the neonatal intensive care unit at Spectrum Health Helen DeVos Children’s Hospital―in the same room but in separate incubators.

 

 

“They are doing well,” says Carol Bos, RN.

 

 

The boys receive nourishment through feeding tubes. They will learn to eat on their own before they are ready to go home.

Perfection

On Monday afternoon, John wheels Julie to the NICU so they can hold the babies, providing skin-to-skin contact. They make sure each boy receives equal cuddle time. This visit, Ivan waits in his crib while his brothers get their turn.

 

Nurse Bos lifts Harrison from his crib and gently helps Julie settle him on her chest.

 

“Hi, buddy. Come to mama,” Julie murmurs. Harrison opens his eyes and looks up at her.

 

John sits in a nearby chair and holds William. The newborn squawks and squirms, then settles in and closes his eyes.

 

“To be able to see him and hold him is an indescribable feeling,” John says.

 

“It’s unlike anything you can ever describe,” Julie agrees. “It’s perfection.”

 

The VanderMolens received a moment of fame with a playful video they created to announce their triple pregnancy. It shows their frantic preparations for parenthood―with John catching three baseballs and Julie filling three baby bottles. It was featured on ABC’s Good Morning America.

 

Now, they can’t wait to bring their babies to their home in Kentwood, Michigan. Three cribs await the boys upstairs. A triple stroller stands ready. They have piles of outfits, diapers and bottles.

 

Photo by Chris Clark

Julie looks forward to taking her sons to church. John dreams of playing sports with the boys.

 

With Julie still recovering from surgery, the couple says they don’t think they have quite come to grips with the challenges ahead.

 

“The full responsibility has not sunk in yet,” John says.

 

“But I wouldn’t say we are fearful about it at all,” Julie says. “The connection we have with them is just so instant. And I am so looking forward to being home, on our own schedule, and figuring it out together as a family.”

 

Reprinted with permission from Spectrum Health Beat.

‘This is going to change her life forever’

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By Sue Thoms, Spectrum Health Beat

 

Photos by Chris Clark, Spectrum Health Beat

 

Melissa Seide sits on the exam table, swings her feet and grins with excitement.

 

Her left leg hangs a couple inches shorter than her right. But it hangs straight―for the first time she can remember.

 

Melissa was just a baby when her leg was broken in the 2010 earthquake in Haiti. When the injury healed, her calf bones remained bent at a right angle.

 

Now, recovering from surgery to straighten the leg, 6-year-old Melissa hopes to hear good news. She can’t wait to ditch the clunky black surgical walking boot. She has a pair of snazzy purple tennis shoes calling her name.

 

Jeffrey Cassidy, MD, a pediatric orthopedist with Spectrum Health Helen DeVos Children’s Hospital, examines Melissa’s leg, flexing her foot back and forth. He performed the operation on the leg Sept. 1, after the agency Healing the Children brought Melissa from her home near Port au Prince, Haiti, to Grand Rapids, Michigan, for medical care.

 

Photo by Chris Clark, Spectrum Health Beat

“The incision has held up beautifully,” he says.

 

“Her leg is just in a really good position. And her joints feel fantastic. Her ankle joint had literally no movement (before the operation).”

I think what people don’t understand about Haiti is that if you can’t walk, you are in big trouble.

 

Jeri Kessenich, MD
Pediatrician

And then he says the words Melissa longs to hear: “We can get rid of that boot and put her in regular shoes and see how she does with that.”

 

Melissa’s host mother, Betsy Miedema, makes sure Melissa understands. “No boot, Melissa,” she says.

 

Melissa presses her hands to her face. Her eyes sparkle.

 

“No boot,” Miedema repeats.

 

Melissa sits silent a moment, her hands still covering her mouth, as if she can’t believe it. She looks up. Grins. And whispers, “Thank you, Jesus!”

 

Soon, she stands on the floor, her purple tennis shoes laced up, and walks tentatively across the room. It takes a bit to get used to the new shoes―the left has a 2-inch lift to accommodate the shorter leg.

 

But the small steps add up to a big moment for this little girl far from home and family.

Adjusting to a new home

“She’s just the sweetest kid,” Miedema says. She and her husband, Eric, welcomed Melissa into their home in Walker, Michigan, serving as her host parents during her stay.

 

Since she arrived in August, Melissa has struggled with homesickness, longing for her family and home in Haiti. She eagerly shows a picture of herself with her mother.

 

But Melissa also has become attached to the Miedemas and their children, 10-year-old Evan and 7-year-old Alaina. She goes to school with Alaina and has learned so much English the family rarely needs an interpreter any more.

Photo by Chris Clark, Spectrum Health Beat

The running and playing is going to make that calf strong. Being a kid is the best therapy there is.

 

Jeffrey Cassidy, MD
Pediatric orthopedic surgeon

Melissa came to the attention of Healing the Children through a school created in Haiti by several Spectrum Health employees, the Power of Education Foundation.

 

The school’s medical director, Jeri Kessenich, MD, also is a pediatrician at Helen DeVos Children’s Hospital. She contacted Healing the Children, as well as Dr. Cassidy and the hospital, to see if they could help Melissa.

 

Dr. Kessenich is unsure how Melissa’s leg became injured―only that it was crushed when a devastating 7.0 magnitude earthquake struck Haiti in 2010.

 

Melissa could hobble for short distances―and with a lot of pain. Family members carried her when she had to walk far.

 

Her leg “was in pretty rough shape,” Dr. Cassidy says. It appeared someone tried to fix the break, but the leg never healed properly. The shin bones―the tibia and fibula―remained bent at a 90-degree angle.

 

In surgery, Dr. Cassidy had to shorten the bones about 2 inches as he straightened them. He also lengthened the skin and tendons in the back of the leg.

 

“At least we can give her a straight leg that is hopefully pain-free,” he says. “Hopefully, this will make a profound difference in her life.”

 

For six weeks after surgery, her leg healed and Melissa looked forward to the day she could wear her new tennis shoes. A local store, Mieras Family Shoes, donated the shoes. Mary Free Bed Rehabilitation Hospital added the lift to the left shoe.

Ready to run and play

Photo by Chris Clark, Spectrum Health Beat

As Melissa walks up and down the hall, testing out her new shoes at Dr. Cassidy’s office, Miedema asks if she should limit her activities. Should she protect Melissa from doing too much too soon? Usually, she uses a wheelchair to cover long distances and walks for shorter stretches.

 

Melissa will find those limits for herself, Dr. Cassidy says. The more she walks, the stronger her leg will become and the less she will need the wheelchair.

 

“The running and playing is going to make that calf strong,” he says. “I think she’ll get her strength back over time. Being a kid is the best therapy there is.”

 

“Run and play,” he tells Melissa. She claps and beams.

 

Melissa gives goodbye hugs to Dr. Cassidy and nurse Chelsea Ciampa, RN.

 

And it’s off to school. She arrives at West Side Christian mid-morning. As she passes a fourth-grade classroom, her host brother, Evan, comes out to give her a hug. Soon, a circle of big kids forms, admiring Melissa’s purple shoes.

 

At her second-grade classroom, a double treat awaits. Melissa gets to show off her shoes and the class sings “Happy Birthday” to her. It’s two days early, but school won’t be in session the day Melissa turns 7.

 

The kids show the journal entries they wrote about Melissa in honor of her birthday.

 

Her host sister, Alaina, talks about the Haitian Creole words she has learned from Melissa. She recites several―including “dlo” (water) and “bon” (good). She explains how to ask if Melissa’s leg hurts: “Fe mal?”

Mobility is crucial

Photo by Chris Clark, Spectrum Health Beat

Melissa’s leg “is healing beautifully,” Dr. Kessenich says. And although there is a 2-inch difference in the length of her legs, that difference will decrease over time. The surgery will prompt the bone to grow faster in an effort to catch up.

 

The doctor hopes, through the school, to continue providing updated shoes with lifts to match Melissa’s growing feet.

 

The repair to the leg will make Melissa’s life much easier―now and in the future, Dr. Kessenich says.

 

“I think what people don’t understand about Haiti is that if you can’t walk, you are in big trouble,” she says. “You don’t have cars or money for motorcycle rides or taxi cabs. People walk―and they walk everywhere. If you are unable to do that, you are not going to be useful to your family.”

 

Being able to walk on two strong legs will allow Melissa to do everything other children do.

 

“This is going to change her life forever,” she says.

 

Visit Spectrum Health Helen DeVos Children’s Hospital to learn more about the nationally ranked pediatric specialties offered.

 

Reprinted with permission from Spectrum Health Beat.

‘An amazing, selfless act’

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By Sue Thoms, Spectrum Health Beat, photos by Chris Clark

 

Cuddling her favorite stuffed dog as she tucked down into a hospital bed, Acacia Walter-Rooks dreamed of life with a healthy kidney.

 

“I’m excited to eat more foods and go to school and see my friends,” she said.

 

At the top of the list for this 14-year-old: French fries and macaroni and cheese.

 

The busy life of a teenage athlete seemed within reach—if her body accepted the donated kidney, and if disease did not attack the new organ.

 

Two big ifs.

 

Acacia had already surmounted one big hurdle: She had a living kidney donor who was a good match.

 

The next day, she would undergo surgery at Spectrum Health Butterworth Hospital to receive a kidney from Beth Hill, a 46-year-old mother of four young children.

 

And Hill was not the only one who offered.

 

Photo by Chris Clark, Spectrum Health Beat

Acacia’s parents, Brie Walter-Rooks and Ryan Rooks, marveled as dozens of friends, neighbors and co-workers volunteered as donors when they learned a rare disease destroyed Acacia’s kidneys. Some potential donors didn’t even know the family well.

 

Transplant coordinators halted the application list at 30, just so they could process the offers on hand.

 

The generosity buoyed the family at a difficult time.

 

“My hope is that Acacia will always remember how loved and cared for she was by her community, and people’s desire to love and care for her so her life can be full and whole,” Ryan said.

 

For Hill, a friend from church, being chosen as the best match was an honor.

 

“I feel very blessed to be able to do that,” she said.

‘Always in motion’

Before kidney disease struck, Acacia exuded good health. She played soccer, made the cut on a select volleyball team, and did gymnastics for fun. She and friends from East Grand Rapids Middle School rode bikes, hung out in Gaslight Village and went to movies.

It became clear we needed to take the next big step.

 

Brie Walter-Rooks
Acacia’s mom

“She was just a really active kid,” Brie said. “Always in motion.”

 

Brie and Ryan adopted Acacia when she was 3 weeks old. They also have a 15-year-old daughter, Mica. The two girls, just a year apart in age, “are totally different and extremely close,” Brie said.

 

Acacia showed the first signs of kidney disease in July 2013, at age 11. She had puffy eyes, swollen ankles and a bloated stomach. Her face and neck swelled.

 

Her parents took her to the emergency department at Spectrum Health Helen DeVos Children’s Hospital.

 

They learned she had a rare kidney disease called focal segmental glomerulosclerosis, which scars and damages the kidney’s filtering units.

 

Genetic testing showed Acacia has a genetic mutation in the APOL1 gene that is sometimes found in people of African descent. The mutation boosts protection from African sleeping sickness, but also carries a sevenfold risk of kidney disease.

 

Acacia had an exceptionally aggressive form of the disease, one that can rapidly lead to end-stage kidney failure. Doctors said she would likely need a transplant in two to six months.

 

But she went 30 months before she reached that point. Even with kidneys functioning at 30 percent, Acacia played sports full-speed and hiked in the mountains on family backpacking trips.

 

In January, however, her kidney function dropped below 20 percent, and her blood pressure rose. Her doctor said she should stop playing sports.

 

“It became clear we needed to take the next big step,” Brie said.

 

On Feb. 11, a surgeon removed Acacia’s failing kidneys.

 

Photo by Chris Clark, Spectrum Health Beat

She began receiving dialysis three times a week. The treatments did the blood-cleaning work of her kidneys, but they left her nauseated and tired. She had to stay home from school.

 

As Acacia underwent final tests before the transplant, her parents also faced the possibility that the new kidney would not be the fix they sought. Thirty percent of those with focal segmental glomerulosclerosis get the disease back within minutes to hours after transplant.

 

Before the operation, Brie said she and Ryan were concerned, but they chose not to dwell on possible downsides.

 

“You realize there is a higher probability that she will be healthy,” Ryan said. “And you go with that.”

‘Called to do this’

Hill remembers the day at Genesis Methodist Church when Brie talked about her daughter’s kidney disease and how she would need a transplant one day.

 

“It was heart-wrenching,” she said.

 

Over the next few weeks, Hill thought several times about donating a kidney. She thought about what she would want for her four young children if they were sick. She ultimately decided she could, and should, offer to help.

 

“I felt called to do this,” she said. “I believe in following those urges.”

 

Talking with her oldest daughter, 6-year-old Emersyn, Hill explained that she had two kidneys but only needed one.

 

“We have to help where we can,” she told her.

 

And Emersyn said, “It’s like having two chances.”

 

At first, Hill wanted to keep a low profile about her decision to donate. She eventually agreed to discuss it publicly to raise awareness about those waiting for kidney transplants.

 

“So many people are suffering,” she said.

 

All those who volunteered to give a kidney to Acacia “are just regular people,” she said. “We all have our own lives and jobs and things that need to be taken care of. Other regular people can help, too.”

Transplant day

The morning of the transplant, the festive crowd gathered in the pre-op area. Acacia curled up under a blue fleece blanket, clutching her stuffed dog, while Mom and Dad talked, smiled and hugged her.

I’m very glad I did it. A little bit of pain is worth it.

 

Beth Hill
Kidney donor

Julia Steinke, MD, Acacia’s pediatric nephrologist, appeared at Acacia’s bedside.

 

“This is the best day ever,” Dr. Steinke said.

 

Nearby, Beth Hill lay in another bed, while her spouse, Lisa, held her hand. Their pastor, the Rev. DeAnn Dobbs, moved from bed to bed, leading them all in prayer.

 

Hill went to the operating room first. As her bed rolled by, she and Acacia raised their hands to each other―a long-distance high five.

 

Photo by Chris Clark, Spectrum Health Beat

In side-by-side operating rooms, one team worked to detach Hill’s left kidney while another team prepared Acacia for the transplant. Surgeon Stanley Sherman, MD, carried the kidney from one room to the other in a basin filled with a slushy saline mixture.

 

Acacia’s parents sat in a waiting room, hoping for updates.

 

Clinical transplant coordinator Eric Beuker soon entered with good news: The kidney was in place and already working.

 

“We have liquid gold,” he said.

 

In the hours and days following transplant, the news got even better. Acacia’s new kidney continued to function well, and her kidney disease did not reappear.

 

“From a well-being standpoint, she is really doing better than expected,” Dr. Steinke said.

 

Acacia will need medication for the rest of her life to prevent rejection of the new organ. But she will no longer have restrictions on her diet. And she will be able to spike volleyballs over the net again.

 

Two days after transplant, Acacia took her first walk. With baby steps, she covered 80 feet down the hall at Helen DeVos Children’s Hospital. She sunk back into the recliner in her room, and her parents and therapists applauded.

 

Acacia, exhausted, had a request: French fries and an Oreo-vanilla milkshake.

Live-saving

In Hill’s room at Butterworth Hospital, her four kids clustered around her. Kathryn, 2, sat on her lap, and Brendan, 3, asked when she would come home.

 

Caught off guard by the pain on the second night post-transplant, she’d pulled through with adjustments in medication.

 

“I’m very glad I did it,” she said. “A little bit of pain is worth it.”

 

Donors go through extensive medical evaluations to make sure patients will function well with one kidney, Dr. Steinke said. Surgery is done laparoscopically, so recovery is quicker than it was in the past. Still, it can take four to six weeks for a donor to recover, as the body adjusts to a 50 percent drop in kidney function.

 

A living donor benefits more than just the recipient. Thirteen children are waiting for kidney transplants at Helen DeVos Children’s Hospital. When a living donor volunteers, it means the line shortens for those waiting for a kidney from a deceased donor.

 

Photo by Chris Clark, Spectrum Health Beat

Dr. Steinke marvels at the commitment of donors like Hill. While some know the recipient well, others volunteer to give to a stranger.

 

“That is just an amazing, selfless act that I always am so humbled by,” she said.

 

For kids like Acacia, a functioning kidney means a chance at a full life and a healthy childhood and teen years.

 

“It’s a life-saving procedure,” Dr. Steinke said. “She will be able to follow whatever dream she wants.”

 

If you are considering becoming a living kidney donor, call the Helen DeVos Children’s Hospital pediatric kidney transplant team at 616.391.2802.

 

Reprinted with permission from Spectrum Health Beat.