After learning one of their unborn twins had a severe birth defect and their local hospital couldn’t handle the delivery, Jennifer and Christopher felt scared and alone. Then they turned to the team at the Center for Fetal Diagnosis and Treatment.
Jennifer and Christopher were 12 weeks into pregnancy when they first saw their twins on an ultrasound. But they also saw something they weren’t expecting: a third image floating in the amniotic fluid.
“It looked like something was sticking out of Chelsea’s stomach,” recalls her husband, Christopher.
The physician at the hospital near the couple’s home in South Jersey told them one of the twins — Chelsea — had gastroschisis, an abdominal wall defect in which the intestine and other organs protrude through an opening in the abdominal wall. There was also a noticeable difference in size between the twins, with Chelsea being smaller.
Due to the severity of the condition and the more complicated nature of delivering twins, that hospital wasn’t equipped to handle Jennifer’s delivery. Nervous and scared, the couple researched centers near their home that could handle the delivery and were drawn to the Center for Fetal Diagnosis and Treatment (CFDT) at Children’s Hospital of Philadelphia (CHOP).
“We chose CHOP because we know it’s a good hospital, and they are used to dealing with these things,” says Jennifer.
A plan of action to treat gastroschisis
After a full-day evaluation, the CFDT team met with the family to discuss the diagnosis and their tailored care plan. Pregnancies diagnosed with gastroschisis are at risk for certain complications such as poor fetal growth, decreased amniotic fluid volume, preterm delivery and stillbirth, so Jennifer and the twins were closely monitored for the rest of the pregnancy.
“When I was at my local hospital, I felt alone and like I was the only person this happened to, but when I got to CHOP they were like, ‘We see this all the time,’” says Jennifer. “We didn’t have any questions when we left there. It put us at ease to know we weren’t the only people this happened to, and they had a way to correct the situation. They couldn’t make certain everything was going to be alright, but they were going to do everything to make sure our daughter had the best outcome.”
Special delivery and gastroschisis surgery
The plan was for Jennifer to have a scheduled c-section delivery in the Garbose Family Special Delivery Unit (SDU), the world’s first birth facility designed exclusively for healthy mothers whose pregnancies are complicated by birth defects. But during a monitoring appointment, the CFDT team noticed Chelsea’s bowel was severely dilated and her stomach was protruding through her abdominal wall. The team mobilized to deliver the twins immediately.
Chelsea and CJ were born in the SDU, which allowed for expert obstetric services for Jennifer and the highest level of immediate care for Chelsea — all within the same pediatric hospital. Christopher remembers the delivery vividly.
“I had never seen anything like that before,” he says of seeing Chelsea. “I just didn’t expect that much of her small intestine to be out. I saw a lot more of it than I thought I would.”
After birth, Chelsea was stabilized and immediately taken to an operating room where her intestines and other organs were placed back into her abdominal cavity and her abdominal wall was closed. After gastroschisis repair, it takes time for the intestines to recover and function normally. Chelsea’s recovery in CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) was a gradual process. She was initially fed through an IV line, and as her bowels healed, the N/IICU team slowly introduced oral feedings.
Every day for the next six weeks, Jennifer and Christopher would wake up and pile CJ, who was released to go home after just a few days in the N/IICU, and their two older daughters — ages 9 and 11 — into the car to visit Chelsea. On weekdays, they would drop the girls off at school, drive an hour to CHOP, then return home in the afternoon in time to get the girls off the school bus. Sometimes they’d drive right back to CHOP so the girls could visit their baby sister, too.
“We didn’t want Chelsea to feel like she was alone,” says Jennifer. “We wanted to be there as much as possible and for her to be aware she had family.”
The N/IICU team saw what the family was juggling and did their best to make sure they were as comfortable as possible on their visits. Each time the family arrived in the N/IICU, staff set up a bed for CJ right next to Chelsea’s.
“He wasn’t a patient anymore, but they still took care of him,” says Jennifer. “I think I appreciate that the most.”
A sweet day after a long recovery
That year, Valentine’s Day was extra sweet because Chelsea was finally discharged from the N/IICU and able to go home. She struggled to gain weight at first, but she’s now taller and bigger than CJ. After two years of annual follow-up appointments at CHOP, Chelsea was given a clean bill of health. The surgical wound on her stomach healed on its own, without the need for stitches, so she barely has a scar.
Now 2 years old, Chelsea and CJ have an unbreakable bond. They are best friends. They go everywhere together, do everything together, and protect each other like the CHOP doctors, nurses and medical staff protected them and their family.
“CHOP made one of the most awful times of our life as good and comfortable as it could be for what we were going through,” says Christopher. “We spent months and months going back and forth to appointments there and almost two months with Chelsea in the N/IICU and everyone from the beginning to the end of the process made us feel good.”