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.
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.
“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.
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.
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.
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.
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.
