| Akron Beacon Journal
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 day 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.
More: Day 1 Baby David story: Parent’s faith, science help Massillon boy beat odds
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 Good Samaritan Hospital, 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.
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.
More: Day 2 Baby David story: Family adjusts to daily long-term challenges for Masillon baby
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 chose. 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.’”
David can say about 10 words, including “dada” and some words for his siblings — Domenik, 7, Daniel, 6 and Stella, 4 — and some relatives and dog.
“If I say, ‘Say mama,’ he laughs and thinks it’s funny, but won’t say mama,” his mother said.
He recognizes voices and “his hearing is phenomenal. He definitely correlates voices with who people are” and is shy if he doesn’t recognize a voice, Carlla said.
The family also is thankful that David has been healthy most of this year and has not been hospitalized for long stretches during the COVID-19 pandemic until the most recent setback.
“Brad and I know that David is in the best hands possible. He will get through this just like all of his other obstacles,” Carlla wrote in a Facebook post updating friends and family the morning after his unexpected surgery. “Our tiny warrior will conquer this battle!”
Two days after his emergency surgery, Carlla asked friends for prayers as David was having trouble breathing and needed breathing assistance. He tested negative for COVID-19, but doctors think he has some type of virus that combined with the stress of the surgery is taxing his body.
“His little body is tired and he is still fighting hard. He needs your prayers more than ever right now,” his mom wrote.
Dr. Shefali Mahesh, director of the division of pediatric nephrology at Akron Children’s Hospital who coordinates David’s care among his many specialists, said in an interview before the most recent setback that she was very pleased with David’s progress.
“It’s also exciting to see him communicate,” Mahesh said. “For parents who are doing as much as Brad and Carlla are doing, the one feeling of reciprocation is they want their child to respond to them, smile to them, talk to them.”
Mahesh recalled how David recently told a virtual crowd of more than 200 people on Zoom when Carlla was a speaker for the National Kidney Foundation gala that he was “good.”
“It was an incredible moment,” said Mahesh, describing the pride in Carlla’s face sharing David with those in attendance. “We did right by this child and we did right by the family.”
Said Carlla: “David is kinda a pretty important kid for the kidney foundation. Kids like David, [the foundation doesn’t] usually get to see or talk to or tell stories about because they don’t make it [to birth].”
Still, Mahesh acknowledges David’s struggles, including his blindness and his cerebral palsy.
“There’s always a part of us that as doctors you want to make things better. You want to fix things. But you also want to do things not just to him but for him,” she said. “These kinds of babies make me feel like we’re doing things for him. We’re making his life better.
“As long as he’s striving, he’s happy, he’s developing, he’s interacting, he’s bringing a lot of joy to people around him,” Mahesh said. “Isn’t that our goal at the end of the day? To bring joy to the people around us?”
Setbacks
This year’s new diagnoses were a big hit, Carlla said.
David has spastic quadriplegic cerebral palsy.
It is not a degenerative disease, which means it can improve with therapy, Carlla said. David receives therapy at Children’s Hospital as well as in-home therapy through the Help Me Grow program.
But the diagnosis, Carlla said, was “pretty devastating. I mean, obviously you’re just kind of like, ‘Can’t he get a break?’ With everything else wrong with him, to have that on top of everything else and then the blindness.”
David’s specialists have explained that he will likely be able to walk, but it will be limited and he will probably need a wheelchair for longer distances.
That brings new challenges as the Detwilers did not build their Massillon home to be handicap accessible.
The Detwilers earlier this year were also hopeful for a surgery by an eye specialist in Michigan who thought the procedure could help David see shadows. But there was too much missing behind his eyes, Carlla said.
David recently had stents put in to help with constant tearing and draining of his eyes.
The family is still hopeful that with advancements, David could see within his lifetime.
“There’s no consensus on whether he can see light or not,” Brad said. “Some think he can. Sometimes we think he does, sometimes we don’t think he does. Until he’s able to tell us if he can see things, there’s hopeful, promising things that are coming technology-wise that maybe can help him.”
Until he gets older, the extent of his developmental delays also won’t be known, his parents said.
“Right now, we’re just treating him like a normal baby and trying to raise him as best we can,” Carlla said.
David is learning how to sit up on his own and can sit for short periods of time in his walker or jumper.
“I know that doesn’t seem like a huge deal for some people, but for my life and him, it’s huge,” Carlla said. “I can pack lunches or make sure Stella’s hair is brushed before school. Little things like that.”
The couple said they wouldn’t be able to handle the around-the-clock care for David and the craziness of life with three active kids in multiple sports and activities without their moms, babysitter and friends.
Brad is a manager for a general contractor in Massillon and had been the longtime radio football analyst for the University of Akron’s games until he quit last year to care for David.
Carlla owns Studio 9 Salon and Spa in Munroe Falls, which recently expanded. She also is opening a new salon with a partner.
Day by day
The Detwilers are taking every day as it comes.
“If you think about him and the road he’s going to have for the rest of his life, it could get overwhelming and get you down real quick,” Brad said. “You just have to roll with it everyday and build upon it day in and day out.
The family has taken precautions during the COVID-19 pandemic, knowing that even “a terrible cold knocks David down,” Carlla said. Still, David has to continue to go to the hospital for appointments and treatments and Carlla said she has felt very safe.
David’s cerebral palsy diagnosis coincided with the March shutdown, so he lost needed physical therapy at the hospital and at home, which was a setback, his parents said. Eventually, his in-home therapy went virtual and he was able to return to the hospital for therapy.
“He needs so much therapy right now to keep him loose and his muscles stretched and to get him to crawl and get him to walk,” Carlla said.
Transplant is goal
The goal now is to get David to gain weight and length to be ready for a kidney transplant — hopefully by late next year — at Cincinnati Children’s Hospital, which coordinates care with Akron Children’s.
“Our quality of life for everyone will really be a lot better. We won’t be tethered down to the machine every night,” Carlla said. “It’ll be life changing for sure to be able to just lay him down at night.”
David is now about 9.5 kilos or 21 pounds. Ideally, babies are around age 2 and 10 kilos or 22 pounds at transplant.
But more importantly, he needs to be tall enough to allow room in his torso for a donor kidney, which most likely will come from an adult, said Mahesh, his nephrologist. He’s currently 72 centimeters; the ideal height is at least 75 to 80 centimeters
A deceased pediatric donor’s kidney could be used, but a kidney from a living donor does better, she said. Living donors must be 18, so David’s young siblings are not eligible. Neither is Carlla because she is a Type 1 diabetic, and David’s grandparents are beyond the age limit of 55 to be tested.
Brad will be tested first and then siblings of Carlla and Brad. If there is not a match, they will ask the public.
David also is missing a bladder, so there is some planning that will need to be done by surgeons and urologists about where the donated kidney will deposit urine. That could potentially be a bladder created by surgeons or a bag outside of the body.
Even when David has his kidney transplant, it won’t be his last.
A kidney from a living donor lasts, on average, about 15 to 20 years, according to the National Kidney Foundation. Patients usually need several transplants within a lifetime.
“As much as it sounds sort of unnerving that these kids need two or three transplants in their lifetime, if you ask these kids how do you feel after a transplant, they feel so much better and that’s what drives them to go for the second or third transplant,” Mahesh said. “We have people who are very successful leading companies or getting married, having children, living a near normal life after kidney transplant.”
But for the time being, David’s first transplant is everyone’s goal.
“If we can get a kidney for him next year and get him off these machines and he eats better, his development will really skyrocket,” Mahesh said.
Hopes for David
Carlla hopes David knows he’s always loved and supported, and his family will help him through his journey.
“Some day he’s going to grow up and realize that he’s different. I hope that he knows that different is OK. Being different just means that you’re special. I just want him to be able to lead the best life he can lead,” she said.
The couple also have leaned heavily on their faith.
“I know David is ‘blind,'” Carlla said. “But I’m not going to stop praying for it because David hasn’t told me that he’s blind yet. You know, maybe he does see something.”
The Detwilers hear from people all the time that David’s story is inspiring and makes them not sweat the small stuff in their lives.
“David is here for a bigger thing. He’s here to teach people things. He’s here to show people that you can get through things,” Carlla said. “I know that God brought David here for something big. I don’t know what that is. But I have no doubt David has something big in his future.”
Beacon Journal staff reporter Betty Lin-Fisher can be reached at 330-996-3724 or blinfisher@thebeaconjournal.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ
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To read the 2019 two-day series about Baby David, go to www.tinyurl.com/ABJBabyDavid
