Baby David's Giant Battle: 'They gave David the gift of life'
A year after his kidney transplant, David Detwiler is going to preschool and exploring worlds beyond his home and the hospital.
The 3½-year-old is no longer tethered to a dialysis machine in his parents’ bedroom for 12 hours overnight –– something he'd done since he was 3 days old.
The milestones are huge for the toddler, who was not expected to make it to birth. He was born without functioning kidneys and later diagnosed as blind with cerebral palsy.
But his parents, Carlla and Brad Detwiler of Massillon, have said they knew he would be an inspiration to many.
“Baby David” was first featured in a two-day series in the Beacon Journal in October 2019. Those and subsequent stories have been shared worldwide.
Baby David’s story
David’s parents were told to terminate the pregnancy of their fourth child or carry the baby to term to get a few minutes before he died because he would not have fully developed lungs to breathe.
Instead, Carlla found doctors at the Cincinnati Children's Fetal Care Center that offered a procedure called amnio infusion. For 10 weeks, she endured painful shots in her abdomen to create amniotic fluid for David.
He survived birth and had peritoneal dialysis at home each night, with the goal of a kidney transplant.
Day 1, Oct. 2019 Baby David story: Parents' faith, science help Massillon boy beat odds
Last Thanksgiving, the Detwilers shared the news that David was approved for transplant, but the family had been warned it may take time to find a living or deceased donor.
A match was found in a week. David got his new kidney on Dec. 5, 2021.
Day 2, Oct. 2019 Baby David story: Family adjusts to daily challenges for baby boy
Heading to school
David loves school, said Carlla.
“We’ll say in the morning ‘Are you ready to go to school?’ and his little body shakes and he says, ‘Yeah!’ ” his mother said.
On a recent day, Carlla chatted with David's preschool teacher, Taylor Edwards. Parents are only allowed in the lobby for drop-off at Eastgate Early Childhood and Family Center, run by the Stark County Board of Developmental Disabilities in Alliance.
Carlla gave David a kiss and left.
Leaving David at school has been a huge adjustment for Carlla, who has been juggling caring for David and his three siblings while running two beauty salons she owns.
Nov. 2020 Baby David update: Baby David's giant battle: Family thankful for son who faces more hurdles
That time has now been filled with work and activities for the family’s other children ages 6, 8 and 9.
But it was hard for Carlla to leave David at school in August.
“We went back and forth about sending him to school because you’re like, ‘Do the benefits outweigh the risks?’ and hands down, we made the right decision,” Carlla said. “He has come so far just from being in school and the socialization and just what he’s learned. He’s talking so much more and getting so much therapy at school.”
David receives multiple therapies that he was getting at the hospital when he was younger or at home through county services.
But the first days were hard.
“Yeah, I was a mess, I’m not going to lie,” Carlla said.
“You just worry. Do they know him? Do they get him? Do they understand when he’s upset or why he's upset? Or what if he's calling for me and I'm not answering?"
A typical school day
It only took David a few days to warm up at school, said Edwards, who is in her fourth year teaching at Eastgate. The school integrates children with disabilities with typically developing peers.
David never cried during drop-off, and Edwards said she only recently saw him cry when he spiked a fever at school.
David's speech has blossomed, she said.
“If he wants to play ball, he’ll say, ‘Karen, ball. Karen, play ball,’ ” said Edwards of David’s aide, who is called his “follower,” Karen Parrish. She is a retired special education intervention teacher.
Sometimes, Edwards will push him on the swing and sing.
Nov. 2021 update: Baby David’s giant battle: Boy born without working kidney is one step closer to transplant
“David will say, ‘swing,’ and then I'll ask him what songs he wants and he'll tell me ‘Wheels on the Bus’ ... and I can get him to fill in the blanks, like ‘the wheels on the bus go’ and he'll say ‘beep, beep, beep.’ ”
Edwards has had other students who are blind and have cerebral palsy, but “David is cognitively with us and he can talk back to us. It takes other staff members’ breath away ... because they don’t expect that.”
David also has special relationships with his classmates.
“To them, he’s another kid, but they know that David has different needs, but they love him and care for him and talk to him,” said Edwards. “He feels their friendship.”
Carlla says he refers to friends by name at home.
“Since he’s been in school, we’ve realized more and more there’s so much going on in his little brain. He’s such a smart little boy. He’s just trying to navigate and figure out how to express that and talk to us,” she said.
He’s also a jokester, purposely answering questions for Carlla, family and his teachers wrong while smiling and giggling.
Edwards and Parrish take special care to involve David with his classmates. During a recent circle time, David was given various toys that make noise during songs.
During activity time at tables, Edwards placed plastic pieces on the table and guided David in putting them on a tube with Velcro. They then removed the pieces from the Velcro while counting and saying numbers out loud.
Dec. 6, 2021: 'A Christmas miracle': Baby David gets a kidney transplant
“He likes to be a part of what everybody else is doing,” said Edwards.
Once, Edwards said she was doing an activity and reading a book about colors.
“I said, ‘The sky is blue, the grass is green,’ and although he can’t see the sky picture or see the grass picture or see what color is in his hands, he’s saying the words. He’s filling in the blanks. He’s absorbing the language around him,” said Edwards. “And he was the only one. I’m like ‘the sky is' and David said 'blue' and I said, 'Where’s the rest of my friends?' ”
David’s medical progress
David has had two major hospitalizations this year, including an eight-day stay earlier this month for strep throat that caused his tonsils to swell so much that it hampered his breathing, a double ear infection and a surgery to reattach his feeding tube. But the hospitalizations have not been related to his kidney.
A 14-day hospital stay in late August and early September, when David was on a ventilator, was “pretty freaking scary,” said Carlla.
“It was the first time I ever heard fear in his voice,” she said.
But David had had fewer hospital stays this year than previous years, said Dr. Shefali Mahesh, director of the division of pediatric nephrology at Akron Children’s Hospital. Mahesh has been coordinating David’s care since Carlla's 32nd week of pregnancy.
Dec. 9, 2021:Baby David's Giant Battle: Massillon toddler is doing 'phenomenal' after kidney transplant
His new kidney function is at 100%, and his levels are probably better than any other 3-year-old kid, said Mahesh.
“Even though he was in the hospital on a ventilator in August, his kidney function was unchanged,” she said.
David's kidney drains straight out of a small hole near his belly button because he does not have a bladder.
Dr. Rupesh Raina, an Akron Children’s pediatric nephrologist, started working with David about two years ago once discussions ramped up about him leading up to a kidney transplant. Raina was very concerned that with David’s other complex medical issues, that David would not be a good candidate for a transplant or that his body would reject the kidney.
The first six months after a transplant and the first year are the most dangerous, with the potential of death, doctors had told the Detwilers.
David had a minor hospital stay in January for some kidney issues, but that was mostly dehydration, said Raina, who has experience with both pediatric and adult kidney transplants.
Raina said he got emotional recently realizing that David had made it to the critical one-year mark past transplant.
“David is not just a patient for me. He’s family. He’s just wrapped me around (his finger) so well,” said Raina.
David’s cognitive advancements in the year is a perfect example of what doctors want to see, Raina said.
Studies have shown patients’ cognitive abilities increase after transplants.
“Now I have a hope that David will be a grown-up individual taking partial responsibility for his health. I am waiting for that day to see that he’s walking, talking,” said Raina.
Raina agrees with Carlla that the kidney is nearly a perfect match. David's story is a wonderful example of the importance of organ donation, Raina said.
“What a nice gift you have given to the family," he said. "I know it’s emotionally very challenging, but donation is basically that person is living in somebody’s life and that life just turned around.”
Mahesh has cared for David, but not as much as she is transitioning to be chair of pediatrics.
Once during a visit, Mahesh teased David when he at first wouldn’t respond to her but interacted with a medical assistant. David started giggling.
“It was a real interaction, which I don’t think we’d ever had before transplant,” she said. “I don’t know that I’ve ever felt this great about being ignored, but it was so cool,” she said.
“It’s so rewarding," Mahesh said. "You see these families go through all of this and the kids go through all of this and then you see a somewhat normal interaction afterward and you’re like, ‘You know, we did right by him.’ ”
David’s many therapies continue and he is gaining more movement to his legs, which are affected by cerebral palsy. He is not crawling and uses a wheelchair stroller.
One of David’s doctors, pediatric physiatrist Dr. Christopher Najarian, has prescribed Botox injections in David’s legs to aid movement, said Carlla.
“He wants to jump more and he’s making the motion of taking steps. He wants to dance. He’s just a lot more fluid and he wants to move,” she said.
Najarian has cerebral palsy and uses a wheelchair, which is inspiring, said Carlla.
“He’s an amazing doctor. What better doctor to give your child these therapies than someone that has actually has the same thing,” Carlla said.
'The same experiences the other kids do'
David has outgrown his crib, so his parents are working on figuring out what type of bed to get him in his own bedroom.
The family was also able to take two extended family vacations – the first since 2017, said Brad. The dialysis would usually keep the family close to home or camping just for the weekend.
The family went to the beach this summer and before Thanksgiving they flew to Florida for a family wedding and a few days at Disney World.
Brad took David on every ride he could, including Dumbo and It’s a Small World.
“It made me a little bit nervous,” said Carlla, “But we want him to have the same experiences the other kids do.”
Grateful for donor
Not much is known about David's kidney donor.
“We can speculate. They had told us it was a smaller kidney, so typically smaller kidneys come from females or a smaller maybe young adult,” said Carlla.
The donor came from a 250-mile radius from Cincinnati Children’s Hospital, where David received his transplant. That would include a region that encompasses much of Ohio, including Akron, and Indianapolis, Lexington and Louisville.
Carlla wrote a letter to the donor’s family through the case manager in August.
“It was a really long letter. You have to be really careful. You can’t say where you’re from, and there are so many stipulations of what you can say,” she said. Carlla was only able to use David’s first name, so she said it is unlikely the donor’s family would be able to read about David’s journey in newspaper stories.
It is up to the donor’s family to answer. The Detwilers have been told a lot of families don’t respond.
“It might take time. They might still be grieving. But I made sure to say how grateful and appreciative we were. They gave David the gift of life. What other gift is more important than that?” said Carlla.
From the heart: Transplant recipient now helps grieving families give gift of life
Carlla knows Dec. 5 is important for both families.
“I wrote in my letter that Dec. 5 is one of the best days of our lives and I almost felt guilty celebrating that because I know what your family member gave to our son and I know what grief that comes with. I can’t imagine, and I’m sure that person didn’t just donate their kidney; they probably donated multiple organs and if it was a child, how long does it take for you to feel comfortable talking about that? You can’t put a timeline on that.
“My heart felt good about that and if they never respond back to us, I’m OK with that, and I know that they know how appreciative we are,” she said.
David will also be featured in an upcoming book due out in January about "David and Goliath" stories by Fox News meteorologist Janice Dean. Carlla said Dean read about David’s journey and wanted to include him.
From the heart: Families forever tied by little girl’s gift of organs
A quiet, grateful Christmas
This Christmas will be so different than last Christmas, said Carlla. David’s kidney transplant was a whirlwind since a match was found so quickly. He stayed at the Cincinnati hospital for 15 days, and the family got home on Dec. 20. Carlla’s friends bought and wrapped presents, and the kids put up the Christmas tree with family, but without their parents.
David’s new kidney was last year’s “Christmas miracle,” said Carlla.
This year, “it’s still a busy time of the year, but we’re going to make the best of it," Carlla said. "We’re going to stay home on Christmas Eve and go to church together and just relax and be together as a family, because what a gift that is in itself to be home together and really celebrate this year."
To read the full Baby David series, go to www.tinyurl.com/ABJBabyDavid.
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. To see her most recent stories and columns, go to www.tinyurl.com/bettylinfisher
This article originally appeared on Akron Beacon Journal: Blind Massillon boy thrives, attends preschool a year after transplant
