PEORIA — A casual observer would never know little Zeke Bell is sick.
Blonde and bright-eyed, the 17-month-old boy is quick to smile at everyone he meets.
His sunny disposition is a blessing to his parents, Katie and David Bell, because Zeke requires daily medical interventions that would be more difficult with a crabby child.
Zeke spends 12 hours every night on a dialysis machine because he was born with end stage renal disease.
A devastating diagnosis, it’s actually much better than what doctors originally had predicted for Zeke. When Katie was 20 weeks along in her pregnancy, she was told the baby would not survive.
“For a month we were preparing for his funeral,” said Katie while holding her son at the family’s Peoria home Thursday afternoon.
After her 20th-week sonogram doctors told the Bells that Zeke had a lower urinary tract obstruction that kept him from passing urine. His little body was so distended with fluid the only thing visible on the sonogram was Zeke’s head and a giant cyst. Because he wasn’t passing urine there was very little amniotic fluid surrounding him, a condition that is detrimental to the development of his lungs.
“They told us his lungs wouldn’t grow, that when he was born he wouldn’t be able to breathe on his own,” Katie said. Doctors could not predict how long the infant would live after birth. The couple began planning comfort care for Zeke in case he lived for a while after his birth.
Then, at Katie’s 24-week sonogram appointment, everything changed.
“The doctor came in and said it’s been a complete 180,” said David.
Zeke’s bladder had ruptured and released the fluid. Amniotic fluid levels were normal.
“His lungs had a chance to develop,” David said. “But we still didn’t know what his life would be like, if he would breathe on his own after he was born.”
Though the family was delighted that Zeke had a chance, the unknowns were daunting. It was even more difficult for Katie because she’s a nurse in the Neonatal Intensive Care Unit at OSF Saint Francis Medical Center.
“I knew way too much,” she said.
At birth, Zeke blessed them by breathing on his own. He came out screaming. Born Feb. 1, 2017, he weighed 7 pounds, 10 ounces.
While his lungs seem to be fine, Zeke has other devastating issues. He has only 15 percent function in his right kidney, and the left kidney doesn’t function at all. His bladder and his abdominal walls are damaged. When Zeke was two days old he had surgery to repair the abdominal wall. He also got a G-tube for feeding, and doctors placed bilateral ureterostomies in his back, tiny holes that allow urine to escape. His parents catch the urine by wrapping a diaper around his back. Unless new medical interventions are developed, Zeke will never be able to urinate normally.
Considering his many medical difficulties, Zeke has done well. He came home after 31 days in the hospital, and there have been no trips to the emergency room, unusual for someone with so many medical challenges, said his mother.
In addition to daily dialysis, Zeke also gets occupational therapy because he’s behind developmentally. And every day he receives growth hormone shots to help him get bigger and stronger. Right now the Bells are waiting for Zeke to get a little bigger so he can get a kidney transplant.
“I’m giving him one of my kidneys,” said Katie. Both parents are a match, so later on, when Zeke needs another kidney, his father will be able to provide it.
“Kidneys only last for so long, and I’m 31, so when he’s in his 20s or 30s he will likely need to get another transplant,” Katie said.
The transplant will be done at Cincinnati Children’s Hospital Medical Center, where the doctors have experience transplanting kidneys in children, a relatively rare procedure. The Bells will need to stay in Cincinnati for weeks after Zeke leaves the hospital.
Needless to say, it’s going to be expensive. With the help of their friends and Children’s Organ Transplant Association, the Bells have launched a fundraising campaign. Their next big event will be “Zooming for Zeke Family Fun Run/Walk” Aug. 4 in Donovan Park. Learn more at Team ZekeB on Facebook.
The family already has raised $30,000 toward its $50,000 goal to help pay for Zeke’s care going forward. They are planning for a lifetime of medical expenses.
“If this walk goes well we might do an annual walk,” Katie said. “We don’t know what our future is gonna hold. But he’s happy, and he’s living life.”
Leslie Renken can be reached at 686-3250 or firstname.lastname@example.org. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.