patient story

When Carilla Parker was pregnant with Nolan and Liam, she was diagnosed with vasa previa. Vasa previa is a rare, but severe complication of pregnancy where some of the fetal umbilical cord blood vessels run across or very close to the opening of the cervix. These vessels are at risk of rupturing when the membranes break. For this reason, a cesarean delivery is recommended between 35- and 37-weeks’ gestation.

Aside from anticipating premature babies due to an early delivery, there was no indication of any other medical concerns during ultrasounds. When both Nolan and Liam were born with Townes-Brock syndrome, it was an overwhelming moment for Carilla.

Townes-Brock syndrome is a rare genetic condition that can cause problems with the feet, heart and kidneys. But more commonly it causes imperforate anus and malformations of the ears and thumbs. According to KidsHealth, imperforate anus happens when the anus is missing or doesn’t have a hole. Both Nolan and Liam were born with imperforate anus, meaning they were unable to have a normal bowel movement.

Upon diagnosis of Townes-Brock syndrome, the labor and delivery unit determined that Nolan and Liam needed more specialized pediatric care and transferred them to the neonatal intensive care unit (NICU) at Dayton Children’s Hospital.

“Our experience with the NICU was great,” said Carilla. “Everyone was extremely accommodating, not just to us, but to every parent who was going through a tough time with their babies.”

In the NICU, Carilla was met by Jeffrey Pence, MD, pediatric surgeon. Dr. Pence sat down with Carilla and explained in detail the surgical procedure for correcting imperforate anus.

At just 3 days old, Nolan and Liam each underwent a surgical procedure known as posterior sagittal anorectoplasty (PSARP). During the procedure, Dr. Pence made an incision between the baby’s butt cheeks and disconnected the rectum from the urinary tract and placed it within the anal sphincter. Surgeries for Nolan and Liam were completed successfully. After a few hours, the boys returned to the NICU where they would recover for nearly one month before being discharged.

Dr. Pence doesn’t anticipate any long-term complications, limitations or side effects from the surgery. However, Nolan and Liam will follow up with pediatric surgery and other specialists to monitor for new symptoms that could arise from Townes-Brock syndrome.

When they aren’t following up with specialists at Dayton Children’s, Nolan and Liam are thriving. They love being outside, playing with their trucks and construction toys!

“If you’re going through something similar, I know it’s hard, but overtime it does get easier.” – Carilla Parker