With each prenatal care visit, new parents, Cali and Zreston, grew more excited to meet their baby. At a 20-week ultrasound visit, their excitement turned to concern when they learned their baby girl had gastroschisis, a birth defect that would require immediate medical attention after delivery. In need of a plan, they turned to staff at Akron Children’s Maternal Fetal Medicine (MFM) to help them prepare for their daughter’s arrival.
“As soon as I learned she had gastroschisis, I was put in touch with the MFM team at Akron Children’s,” said Cali Chaffin, Kaphila’s mom. “They met with us to explain the condition, the care needed right after delivery and what her needs would be after surgery… I felt comforted knowing we were going to be in good hands.”
Gastroschisis is a relatively rare condition where the intestines stick out through a hole in the baby’s belly wall near the umbilical cord. It develops early in pregnancy due to a weakness in the baby’s abdominal wall muscles. Since the intestines aren’t protected during pregnancy, they are exposed to the amniotic fluid so they can become irritated, causing them to shorten, twist, or swell as the baby grows.
Part of Kaphila’s care plan included regular visits with her mom’s obstetrician and with the MFM team at Akron Children’s, where they monitored her development via ultrasound and made sure mom was prepared for delivery.
On June 14, Kaphila was born with all of her bowels, bladder, stomach and fallopian tubes outside of her body, and her care team was ready to execute the plan.
Kaphila’s parents live about 40 minutes from Akron, but they chose to deliver at a hospital close to Akron Children’s where her care team would be waiting. After spending a quick moment with Kaphila after delivery, she was transported to Akron Children’s NICU where staff would close her abdominal wall and return organs to her abdomen.
“When Kaphila arrived, doctors placed a silo over her organs to allow gravity to pull them back in on their own as they shrank to normal size. It also let her lungs and diaphragm settle in naturally to make sure it wasn’t hard for her to breathe,” said Cali. “After about 6 hours, the doctors said she progressed so well that she didn’t need surgery! We were shocked because it usually takes babies about week to do what she did in a few hours.”
Although quick to get her organs in place, Kaphila remains in the NICU to make sure her little system is processing fluids correctly. She started with an IV and moved to bottle-feeds after a month. After a few bumps in the road, Kaphila had to go back on a feeding tube, but is still progressing. Once Kaphila hits all of her milestones – takes larger feedings by mouth, has regular diaper changes and keeps gaining weight – she will graduate from the NICU and go home for the first time.
“Akron Children’s has been fantastic…We were worried about how to hold her at first because she had so many stickers on her chest with IVs, tubes and wires, but they encouraged us to care for her as we would if she were at home,” said Cali. “The nurses treat us like we’re family and always make us feel comfortable, which we appreciate. I know it’s not their job to worry about us, but they do, and we are thankful for their kindness and the care they provide our baby.”
If your baby has been diagnosed with gastroschisis during pregnancy, ask your provider for information about Akron Children’s Maternal Fetal Medicine team who can put a care plan in place for your baby.