Parents' faith, science help Massillon boy beat odds

Editor's note: This is the first in a series of stories about Baby David Detwiler. The first two-day series was published in Oct. 2019. See below for the links to more.

Every night around 7, baby David Detwiler’s bedtime routine involves attaching a tube to his chest catheter, which constantly fills his chest cavity with fluid and drains over the next 12 hours.

The procedure, called peritoneal dialysis, is what’s keeping David alive by functioning in place of his one existing — but non-working — kidney.

The journey to birth for baby David, who turns 6 months old on Wednesday, wasn’t typical. 

It's a story of parental faith, a mother's determination and the miracles of modern medicine. And his story's not done yet.

Day 2:Family adjusts to daily challenges for baby boy

Nov. 2020 update::Baby David's giant battle: Family thankful for son who faces more hurdles

Nov. 2021 update:Baby David’s giant battle: Boy born without working kidney is one step closer to transplant

Dec. 6, 2021 update::'A Christmas miracle': Baby David gets a kidney transplant

Dec. 9, 2021 update:Baby David's Giant Battle: Massillon toddler is doing 'phenomenal' after kidney transplant

Dec. 2022 update:Baby David's Giant Battle: 'They gave David the gift of life'

His mother, Carlla Detwiler, who was 38 at the time, was at a regular doctor’s checkup 20 weeks into her pregnancy when the doctor asked how quickly her husband, Brad, could get to the office.

They were told their baby had only one kidney. Although someone can live with one kidney, the baby’s sole kidney was full of cysts and not functioning.

The Massillon couple, already the parents of three children, were told they had two options: terminate the pregnancy or carry the baby to term and possibly get a few minutes with him before he died because he would not have fully developed lungs to breathe.

Without a functioning kidney, baby David was not making urine. Starting at 12 weeks into pregnancy, the amniotic fluid in the womb is made up largely of urine from the fetus.

Amniotic fluid is vitally important to the development of the lungs to allow the baby to take his own breath at birth and beyond.

“We were devastated,” recalled Carlla, whose maiden name is Vennitti and who grew up in Warren. “We told him right then and there that terminating wasn’t an option for us.”

Carlla said she and her husband of seven years had faith in God’s plan for their baby — whether he would live or die.

“I would have rather have had two minutes with him than nothing at all,” she said.

Brad, who grew up in the North Canton area, said the baby wasn’t in any pain and was sucking his thumb in the ultrasound.

Added Carlla: “His heartbeat was strong and all these other pieces and parts to him looked normal. He was moving around.

“I know everyone makes decisions for themselves. For us, [termination] wasn’t an option,” she said.

The doctor respected the Detwilers' decision and the couple went home to do their own research.

Searching for answers

They could only find one story of a Washington state congresswoman, Jamie Hererra Beutler, who in 2013 successfully delivered a healthy baby after undergoing a procedure called amnio infusion. The procedure, in which saline solution is injected into the mother’s womb to mimic amniotic fluid to allow the baby’s lungs to develop, is offered at about 10 hospitals around the country, mostly only through clinical trials.

Carlla cold-called several of the centers to see if she could get the treatment. The doctors at the Cincinnati Children's Fetal Care Center, a collaboration of Cincinnati Children’s Hospital Medical Center, University of Cincinnati Medical Center and TriHealth, where amnio infusion is being done as an investigational procedure, agreed to treat Carlla.

It is the only program in Ohio that offers the procedure.

The center has been offering amnio infusions since 2011 for babies in utero who have bladder blockages that do not allow urine to escape into the uterus and since 2014 for other diagnoses, such as Carlla’s.

“The odds were against us,” Carlla said. “We went into it knowing it was a long shot, but what did we have to lose?”

So on Christmas day, Carlla and Brad left their three children — Domenik, 6, Daniel, 5, and Stella, 3 — with their grandparents and began what would be weekly trips to Cincinnati for the procedure.

On that first four-hour drive to Cincinnati, Carlla and Brad chose a name for their unborn son: David.

“David for David and Goliath — our fighter — and Matthew was the name of Brad’s cousin that passed when he was younger. Matthew also meant a lot to us as its meaning is ‘Gift from God.’ We thought it was a perfect name for him as he was all of those to us,” Carlla said.

There is a saying that the Detwilers also believe is powerful: “If God puts a Goliath in front of you, there must be a David inside of you.”

“We’re taking this life journey, and David is showing us one stone at a time,” Carlla said.

Adds Brad: “It’s unbelievable how much you can learn from a baby and look up to a baby. Watching him fight and persevere and overcome obstacle over obstacle shows us he wants to be here. We’ll fight for him as long as he shows us he wants to fight.”

Life-saving infusions

It is not that uncommon for desperate mothers from around the country to call and self-refer to the Cincinnati Fetal Center, said Dr. Sammy Tabbah, a maternal fetal medicine specialist.

“This diagnosis used to be a universally lethal diagnosis and then patients do their own searching and they find us in that fashion,” he said.

Even with the mother going through the amnio infusion procedure to inject saline solution into the uterus to mimic amniotic fluid — ideally from weeks 18 to about 34 — the risks are still high, Tabbah said. Anytime the uterus is punctured, there is a risk for infection, which could lead to death of the baby, or a risk of preterm labor.

The costs are also high. The Detwilers’ insurance covered the procedures, but they incurred hefty out-of-network medical bills. However, the family has declined offers of financial assistance from friends, saying they feel it’s their responsibility.

Carlla owns Studio 9 Salon and Spa in Munroe Falls. Brad, a manager for a general contractor in Massillon, also had been the longtime radio football analyst for the University of Akron’s games until he quit this season to care for David.

About 25 patients with similar diagnoses to Carlia have undergone the amnio infusions in Cincinnati since 2014.

About 80% of those patients’ babies had lungs that were developed enough to breathe at birth. But only half lived long enough to be discharged home to undergo daily dialysis until they are large enough for a transplant, typically around age 2 or 22 pounds. Tabbah said it’s still too early in the patient population to know how many patients have made it to transplant.

For 10 weeks, between her 23rd and 32nd weeks of pregnancy, Carlla and Brad or sometimes her dad left their Massillon home around 4 each Friday morning to get to Cincinnati in time for weekly infusion and drive home the same day.

The procedure, which took about 90 minutes, was painful from both the needle and resulting cramping. Carlla’s uterus would cramp often throughout the first day and night.

“I have a tremendous amount of respect” for the mothers, said Tabbah, who with Dr. David McKinney performed Carlla’s procedures.

“They truly are the definition of resilience in knowing what they’re up against and putting so much of their love and their time into caring for their child,” Tabbah said.

However, Tabbah said, the procedures are not the right choice for everyone.

Carlla said there was never any second-guessing what she needed to do for baby David.

“Instantly, if he was low on fluid, you’d see him start moving like crazy,” Carlla said.

The doctors in Cincinnati wanted Carlla to deliver the baby there, but the couple needed to be home with their family, especially since David would have a lengthy stay in the hospital after birth.

Planning for birth

At 32 weeks into the pregnancy, or more than 8 months along, Carlla called the nephrology department at Akron Children’s Hospital. She left as detailed a message as she could and asked if someone would call her back.

Dr. Shefali Mahesh, director of the division of pediatric nephrology at Akron Children’s, recalls seeing a sticky note with the message from Carlla.

Mahesh knew she needed to get the family to the hospital to “help them figure out how this would all work.”

Mahesh coordinated care between Carlla’s original Aultman Hospital doctor and Cincinnati doctors and also brought in Children’s specialists and doctors from Cleveland Clinic Akron General, where Carlla would deliver the baby.

Her first and most important challenge: “Is the baby going to make it out of the delivery room?”

Day 2:Family adjusts to daily challenges for baby boy

More:Baby David's giant battle: Family thankful for son who faces more hurdles

Beacon Journal consumer columnist and medical 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 and see all her stories at www.tinyurl.com/bettylinfisher.