By Marie Havenga, Spectrum Health Beat
Photos by Chris Clark, Spectrum Health Beat
To celebrate her 11th birthday, Lily Brouwer and her family planned a mini-vacation at a beachfront cabin in Grand Haven, Michigan.
She had been battling an upset stomach and intermittent abdominal pain, but determined to have fun, the birthday girl insisted on going.
Frigid Lake Michigan waves rolled in when they arrived that dreary Sunday. They still remember the date: Dec. 30, 2012.
A more chilling fear would sweep over the family.
After loading up with Motrin and going sledding, Lily’s condition worsened. She thought she was seeing blood in her frequent diarrhea.
“I tried to tuck her into bed and prayed for her, but she was up 15 minutes later,” said Michelle Brouwer, Lily’s mom.
Lily’s dad, David, said they knew something wasn’t right, that this was no ordinary stomach virus.
Michelle drove Lily to Spectrum Health Helen DeVos Children’s Hospital in Grand Rapids.
When the clock rolled to midnight on New Year’s Eve, ushering in Lily’s birthday, they were in the emergency room.
“She was lying on my lap, writhing in pain,” Michelle said. “She was in complete misery.”
Doctors told Michelle they were going to observe Lily for six hours. If she could keep fluids down, they could release her.
Instead, they admitted her. She remained there for 21 days.
Tainted food
Michelle’s parents dropped off a birthday gift to Lily at the hospital and then tended to Lily’s siblings—Madeline, Jorja and Liza—so Michelle and David could watch over their daughter.
For four days, Lily went to the bathroom every 15 minutes. Bloody diarrhea. She vomited frequently. She took morphine every two hours for pain. A steady stream of IV fluids dripped into her young veins.
With doctors trying to pinpoint a cause, anyone who visited the room had to don gowns and gloves.
That Thursday afternoon, a pediatric nephrologist delivered the soul-shaking news: Lily had hemolytic uremic syndrome. The doctor said Lily could lose her kidneys. And her life.
Lily fell into acute kidney failure. She was rushed to the intensive care unit and put on a huge dialysis machine.
According to Alejandro Quiroga, MD, section chief of pediatric nephrology at Helen DeVos Children’s Hospital, something Lily ate caused this life-threatening condition.
“(Hemolytic uremic syndrome) is a condition where there is a toxin produced by a bacteria in your gut that causes your red blood cells to be destroyed and form small clots in your blood vessels, creating multiple organ damage, but particularly to the kidney,” Dr. Quiroga said.
Lily either ingested undercooked or poorly handled food, Dr. Quiroga said.
“We don’t know from where,” he said. “The health department was notified and they performed an investigation without any yield.”
David and Michelle prayed. And they cried. But they had faith. In God, and in the doctors who cared for their precious daughter.
“There were countless times I feared the loss of Lily’s life and how that would forever change the course of our family,” David said. “But we continued to pray, believe, and put our faith in the amazing team of doctors and nurses responsible for her care.”
Incomprehensible horror
Lily remained in the ICU until Sunday afternoon. While there, she began suffering from hallucinations.
“They had to rush her down for a CT scan,” Michelle said. “It can attack your brain. Every organ can be affected. She saw pretty much every specialist there is. Her heart rhythm was off. She developed pancreatitis. She had a pleural effusion.”
How could this be? Their precious daughter, who had just celebrated her birthday, appeared to be nearing her death day.
“We had thousands of people from around the world praying for Lily,” Michelle said.
As if life couldn’t get any more terrifying, another dagger struck.
“We got a text from grandma that our baby, Liza, who was 5 at the time, was having vomiting and bloody diarrhea,” Michelle said.
David and Michelle swallowed hard as they reread the text message in disbelief.
“I was horrified,” David said. “After watching Lily for 10 days and knowing what she was going through, it was incomprehensible to think that Liza was going to have to go through that pain as well.”
Michelle returned home to check on Liza.
“I got a call from my husband,” she said. “He didn’t know what to say other than, ‘You need to get down here to the hospital right away.’ The way he said it, I didn’t know if Lily was still going to be there when I got there.”
Lily had difficulty breathing. She was upside down in bed, gasping for air.
The grandparents took Liza to the Helen DeVos Children’s Hospital emergency department.
“They were going to transfer Liza to the seventh floor to be right next to Lily,” Michelle said. “But at the same time, Lily was getting worse and they had to transfer her back up to ICU.”
‘I’m afraid I’m going to see Jesus’
Lily told David she couldn’t breathe.
“She said, ‘Daddy, I can’t breathe, I’m afraid I’m going to see Jesus,’” Michelle said. “She told him, ‘I don’t want to see Jesus today.’”
They intubated Lily. She remained on a ventilator for four days.
Meanwhile, the nightmare continued. Liza’s numbers trended in the wrong direction. She also tested positive for hemolytic uremic syndrome, and transferred to the intensive care unit.
“This could be lethal in some cases and Lily and Liza were critically ill and at risk of death or permanent organ damage,” Dr. Quiroga said.
Slowly, the medicine—and the prayers—began to work.
“We tried an off-label medication on them that in our experience and other centers’ case reports have shown improvement in severe cases like them,” Dr. Quiroga said.
A community responds
Michelle and David’s emotions crawled from the valley of death to the mountaintop of hope.
Lily came home from the hospital on Jan. 18. Liza followed three days later.
Hundreds of people lined the Brouwers’ street, clapping and cheering.
“Lily is a miracle that she’s here and that her kidneys started to turn back on,” Michelle said. “Our God is a big God and he did a miracle. Lily and Liza are amazing. They’re miracles. They’re perfectly healed.”
The girls went home on a special diet and required outpatient dialysis.
Now, they’re both off medication and only need to do urine checks once a year with their pediatrician.
“They are doing great now,” Dr. Quiroga said. “They have normal lives and the prognosis is excellent.”
Michelle said no one would even know the girls were sick if it weren’t for the testimony the family has to share.
The illness may be gone, but the lessons remain for the Brouwers and all who know them.
“This story affected so many people,” David said. “Lily and Liza became symbols in our community for hope, faith and healing. We were shown so much support, love and care. During that time and ever since, we have tried to do the same for others going through horrible times as well. We witnessed a profound miracle and everyone near and far realized it, too.”
Learn more about the pediatric specialty care available at Helen DeVos Children’s Hospital, including the nationally-ranked pediatric nephrology program.
Reprinted with permission from Spectrum Health Beat.
