Brie was born on Jan. 7, 2009. Within two minutes she was under anesthesia. Just 21 minutes later, the pacing wires and temporary pacemaker necessary to keep her heart beating at a healthy rhythm had been placed.
A pediatric cardiologist walked down the hall to tell her parents, still in the C-section operating room, that things were going well.
Soon, Brie was in the Evelyn and Daniel M. Tabas Cardiac Intensive Care Unit (CICU), where she would stay until she was strong enough for a more permanent pacemaker.
The diagnosis – heart block
Brie’s delivery in the Garbose Family Special Delivery Unit (SDU), which is for mothers having babies with known birth defects, was one step in what has been a long journey for her family. When her mother, Ronda, was approximately 20 weeks pregnant, a fetal ultrasound showed the baby had a very slow heartbeat.
A cardiologist at a different hospital told Ronda that her baby had complete heart block, a serious heart defect in which there are flaws in the electrical system that controls the heartbeat.
When she got home, Ronda went online to find out all she could. In particular, she was looking for a hospital that had experience in placing pacemakers in newborns.
She called several hospitals near the family's home in New Jersey. Finally, someone suggested the Fetal Heart Program at The Children’s Hospital of Philadelphia. Ronda called right away. She explained her situation to Denise Donaghue, MSN, RN, a registered nurse who is the coordinator of the program. She asked Ronda to come in for an appointment immediately.
A few days later Ronda and her husband, Kris, made the two-hour trip to Philadelphia. Jack Rychik, MD, director of the Fetal Heart Program, performed an echocardiogram and other tests.
Their experience up to then had been with doctors who seemed unsure what to do for the baby.
“Dr. Rychik said, ‘We see this and we can help you,’” Ronda recalls. “It was so positive. I felt good about that.”
Rychik explained that Ronda would deliver her baby right at Children's Hospital. The Special Delivery Unit is on the same floor as state-of-the-art cardiac operating rooms, catheterization labs and cardiac patient units. For Ronda and Kris, it was a comfort knowing they would be in the same place as their daughter.
“I don’t know what we would have done without CHOP,” Ronda remembers. “They’re very patient and explained everything they were going to do. They drew pictures and showed me exactly what was wrong with her heart and what they were going to do to fix it. I could call at any time and ask a question.”
Preparing for delivery and immediate care
As her pregnancy progressed, Ronda made the trip to Philly once a week for ultrasound and other tests. Eventually she moved into the Ronald McDonald House of Southern New Jersey, where she stayed for a month, so she was close to the Hospital when she went into labor.
Ronda was in the Hospital for four days after her C-section delivery. Every day, she was able to go by wheelchair to the Cardiac Intensive Care Unit and spend time with her baby. Had Brie been born in an adult hospital, and taken to a children’s hospital, Ronda wouldn’t have been able to visit for days.
Brie was in the hospital for a month. With guidance from the nurses, Ronda helped change her diapers, give her baths and feed Brie bottles of breast milk. “Everybody’s demeanor and bedside manner was very friendly and very family friendly,” Ronda recalls.
When Brie was approximately 1 month old, pediatric heart surgeon J. William Gaynor, MD, implanted a more permanent pacemaker. Brie was discharged from the Hospital on Valentine’s Day weekend.
Today, at 20 months old, Brie is a picture of health. She can’t be in prolonged contact with electrical devices that have strong magnetic fields, such as cellphones and MP3 players, and her family is careful that she doesn’t play in a way that she might get hit in the stomach, where the pacemaker box is placed.
But, her mom says, “I don’t treat her like she’s fragile. I let her act like a normal kid. No one would ever know. She’s running around. She is doing everything a normal baby does.”
Brie will need additional surgery when she is bigger, to replace the pacemaker battery and move the pacemaker box to under her collarbone. She doesn’t have to take medication. Once a month her pacemaker is tested, by phone.
Every six months, she visits her primary cardiologist, Cheryl C. Kurer, MD, at Saint Peter’s University Hospital in New Brunswick, which is closer to home. (Cardiologists from The Children’s Hospital of Philadelphia staff Saint Peter’s Pediatric Cardiology Division.) “Having the satellite office in New Jersey is a great thing for us,” Ronda says.
Brie loves to play with the family puppy, and to play with her brother, Cameron.
“Brie loves to make people laugh,” Ronda says. “She’s a clown. She likes to make silly faces.”
Reflecting on the turmoil of her pregnancy and Brie’s birth, Ronda is thankful that she found The Children’s Hospital of Philadelphia.
“I don’t think Brie would be alive if I hadn’t found CHOP,” she says. “Even though it was a bad time in my life, I think back and everything about the experience was good.”
Originally posted: September 2010