Carlla Detwiler and Patricia Lopp were strangers brought together by unimaginable adversity of carrying babies who had no working kidneys.
Both women were advised to consider terminating their pregnancies, or prepare for the possibility that their babies would die shortly after birth. Newborns with non-functioning kidneys have difficulty surviving because their lungs need amniotic fluid to develop. Amniotic fluid is made mostly of baby urine, but these babies didn’t make any since they did not have working kidneys.
Carlla and husband Brad rejected the idea of terminating the pregnancy. So did Patricia.
“Doctors counted him out. They thought he wouldn’t make it,” said Patricia. “But you don’t give up because at the end of the day, God has the final say so.”
Late in their pregnancies in 2019, Carlla and Patricia separately found their way to Dr. Shefali Mahesh, director of Pediatric Nephrology and Dialysis at Akron Children’s Hospital.
Carlla had done her research and learned Akron Children’s provides peritoneal dialysis for neonates. Unlike the more common hemodialysis, which filters blood and returns it to the body, peritoneal dialysis involves infusion of a cleansing fluid into part of the abdomen to filter out blood waste, and then draining the fluid. This is the preferred dialysis for babies in their first days of life.
Carlla had made weekly trips to Cincinnati for infusions of a solution into her womb to simulate amniotic fluid. The Jackson Township couple considered staying in Cincinnati after birth for the dialysis treatments. But with 3 young children at home, they decided against it.
“I cold-called Dr. Mahesh. She didn’t know anything about me. But we came in and she looked at us and said, ‘We can do this.’” Carlla said.
Patricia said Dr. Mahesh was the first to give her hope.
Dr. Mahesh coordinated a plan with teams of specialists at both women’s birthing hospitals and Akron Children’s Hospital. They would need to transfer the babies quickly on high ventilator support to Akron Children’s Neonatal Intensive Care Unit; be prepared to conduct numerous tests and start peritoneal dialysis shortly after birth.
The newborns would need surgery within a couple days to implant a catheter for dialysis treatment. They would spend months in the NICU, and parents needed to be trained on how to do the dialysis at home — for 12 hours overnight, every night.
In April 2019, Carlla underwent an emergency C-section and gave birth to David at Cleveland Clinic Akron General. He was very sick, and Carlla’s out-of-town uncle, a priest, raced to the hospital to baptize him.
Transferred to Akron Children’s NICU, David was on a ventilator for 3 days when he started breathing on his own. On day 5, he started dialysis.
The couple named him for the underdog in “David and Goliath.”
David spent the next 69 days in the NICU. As his stay was nearing the end, Patricia gave birth to her son, Chosen, at Summa Health, and he was whisked to Akron Children’s NICU.
Like David, Chosen defied the odds. He breathed on his own after about 2 weeks and started peritoneal dialysis.
Dr. Mahesh introduced Patricia to Carlla. They bonded instantly, as they shared their journeys, their sons’ condition and the long road ahead.
“Carlla told me it was going to be all right,” said Patricia, who lives an Akron and has a 13-year-old son. “She said these are miracle babies. I said yes, they definitely are.”
“They both connected in a special way,” Dr. Mahesh said. “They come from different walks of life, different backgrounds, and none of that matters. These two women have derived such strength from each other. It’s amazing.”
Both boys are on home dialysis until they are big enough for kidney transplant, which should be around age 2. They both also have a feeding tube and remain medically fragile. Carlla and Brad also learned that David is blind, which she suspected when he was in intensive care.
“As a mother, I knew something was wrong with his vision, but it took a back burner because he had so much other stuff going on,” Carlla said. “That was an even bigger pill to swallow because there’s nothing they can do. It adds a whole other layer to his delays and development.”
The owner of Studio 9 Salon and Spa in Munroe Falls, Carlla said she has been blessed with family support and a staff that takes care of business during her many medical absences. Both mothers bring their sons to Akron Children’s every week for infant therapy, blood tests and a visit with the dialysis team.
Both hope that their stories will help other parents facing adversity.
Their sons weren’t expected to make it, but they did.
“That’s why I named him Chosen,” Patricia said. “Because they doubted him, and he showed them something else.”
Dr. Mahesh said families like theirs “need to be given the right amount of hope.”
“You don’t want to mislead them, but we have the ability to help these babies and their parents.”