Last Thanksgiving, baby David Detwiler had just gotten home from what would be a small break in a 4-month-long hospital stay through the holidays after his catheter — his lifeline — malfunctioned and got infected.
David and his parents are no strangers to Akron Children’s Hospital. The Massillon family has spent a lot of time there during David’s 19 months, both for hospital stays and medical visits with a large team of physicians, therapists and others.
Last week, just days before Thanksgiving, David’s catheter again malfunctioned, sending the family back to the hospital for surgery to replace the catheter — exactly one year to the date when he underwent the same emergency procedure.
David was featured in a two-day series in the Beacon Journal in October 2019. The stories chronicled how his parents discovered before his birth that their fourth child had no functioning kidney. They were told to terminate the pregnancy or carry the baby to term to potentially get a few minutes before he died because he would not have fully developed lungs to breathe.
But his mother, Carlla Detwiler, found doctors at the Cincinnati Fetal Center, a collaboration of Cincinnati Children’s Hospital Medical Center, University of Cincinnati Medical Center and TriHealth, who agreed to treat her with a procedure called amnio infusion.
For 10 weeks, Carlla and her husband, Brad, drove to Cincinnati for her to get painful shots in her abdomen to create amniotic fluid to help get David to birth.
David survived birth and now undergoes 12 hours of peritoneal dialysis at home each night, with the goal of a kidney transplant.
But there have been many struggles for David, who is named after a saying the Detwilers believe is powerful: “If God puts a Goliath in front of you, there must be a David inside of you.”
Last year, David was diagnosed with blindness in both eyes.
This year has brought more diagnoses.
Doctors determined David has cerebral palsy, which affects all four of his limbs. It is a problem that affects muscle tone, movement and motor skills and is often caused by brain damage before or during a baby’s birth.
David also has a tethered spinal cord, is missing a rib, has scoliosis and has had some neurological issues, including seizures.
However, this Thanksgiving, his parents continue to be thankful for their miracle child.
“To think that we could have made a different decision and David wouldn’t be here is mind-boggling to me because of how far he’s come,” Carlla said. “I know people look at our situation and look at David and think maybe they’re sad for him or it’s not the life they would have chosen. But if you look at him and you see what he does day in and day out and how much of a fighter he is, we’re so thankful we made that decision because he’s this beautiful baby who loves his life. He doesn’t know any differently.
“Has it been challenging? Absolutely. Am I tired? Absolutely.”
Added Brad: “You definitely don’t take things for granted and you appreciate things a lot more. Even for being a little baby, you learn so much from him.”
The happiest kid
“David has so many layers of things,” Carlla said. “It’s not just his kidneys. It’s not just that he’s blind. It’s not that he has cerebral palsy. He has all of these things together that has been life-changing for all of us.
“But he’s the happiest kid you’ll ever meet,” said Carlla, explaining David’s mood on the drive home after a recent two-day hospital stay.
“He’s in the back babbling and I asked him how he was doing and he said, ‘Good, good, good!’ ” Carlla said. “He’s not just a miracle. He’s amazing.”
Although David has developmental and neurological delays, the family celebrates his advancements and interactions.
“He’ll answer ‘Yeah’ and ‘No’ and he shakes his head no,” Brad said. “When we ask, ‘Do you like going to the hospital?’ he’ll violently shake his head ‘no.’ “