It was at an appointment where they expected good news that Eva and Jonathan found out something was wrong.
“We were so excited to go for our ultrasound and find out if we were having a boy or a girl,” Eva recalls. “The ultrasound tech had a huge smile on her face as she looked at the baby, until her face changed and her eyes zeroed in on the baby’s heart. We knew instantly something was not right. Suddenly we were in a tailspin.”
Finding out that your baby has a heart defect is life-altering. Like so many in their place, Eva and Jonathan were scared — and determined. “We truly wanted this baby and needed to find the best care,” Eva says. “Thankfully we ended up close to home at The Children’s Hospital of Philadelphia.”
Here the tailspin ended as the couple experienced the first steps in a continuum of care that will extend from their babies birth and as he grows. They met with Jack Rychik, MD, director of the Fetal Heart Program, who confirmed the diagnosis: transposition of the great arteries (TGA). TGA is a congenital heart defect in which the aorta and the pulmonary artery (called “the great arteries” because they are the largest) are attached to the heart in the wrong places. Decades ago children with TGA rarely survived past infancy. Today, with the open heart surgery required for children with this heart defect, nearly all children with TGA survive. The surgery, known as the “arterial switch” operation, moves the blood vessels to the correct positions.
Children with TGA can become critically ill in the hours after they are born. In this fragile state, they must be transported by helicopter or ambulance to a pediatric hospital. Eva and Jonathan found they had a much better alternative at CHOP, with an on-site delivery unit. The Garbose Family Special Delivery Unit (SDU), opened in 2008 as the first of its kind in the world, is exclusively for mothers carrying babies with diagnosed birth defects, including congenital heart defects such as TGA. It is on the same floor as cardiac patient units and operating rooms, allowing for the safest care while keeping mother and baby close.
Eva and Jonathan toured the delivery unit and learned that as soon as their son was born he would be passed through a small window into the adjacent room, where a team of specially trained neonatologists and nurses would make sure he was stable and breathing correctly.
The couple was able to retain a sense of humor: “We thought the window looked like something at a drive-through,” Eva says. But it was a difficult time. “Our vision for the birth changed,” she recalls. “We knew it was going to be a rough start. We didn’t know when we would first get to hold him. But we knew we were in the best hands, and we are so grateful for that.”
This experience, of worry and uncertainty about the well-being of their child, has helped them better understand what their own parents went through. Both Eva and Jonathan, who are 37 years old, have been deaf since contracting spinal meningitis, Eva at 2 and Jonathan at 1.
They both went on to develop an interest in education, and met at the Pennsylvania School for the Deaf, where Eva is a high school principal and Jonathan is an early intervention teacher.
The experience of finding out about his own child’s birth defect has helped Jonathan become a better teacher. “Now I have experienced the grief the families I work with, and my own parents, were realizing,” he says. “Our situation has helped me in how I deal with parents and their children being deaf and the grief they feel.”
As the pregnancy progressed, Eva and Jonathan visited CHOP frequently. “My husband and I enjoyed going there,” Eva says. “The Fetal Heart Program feels like a wonderful community, which made us so comfortable. The staff is wonderful and always upbeat. ” During each appointment, and the delivery, Eva and Jonathan had a sign language interpreter provided by CHOP.
On August 23 Eva was admitted to the Special Delivery Unit. She had told obstetrician Victor A. Zachian, MD, that she would prefer not to have a c-section, and with his help was able to have a natural birth. Their baby was immediately passed to a team led by neonatologist Michael Padula, MD. After the baby was stabilized, Dr. Padula’s team brought him back into the delivery room to see his parents, and then took him down the hall to the Cardiac Intensive Care Unit.
The next morning, Chase, just 9 hours old, went into surgery. Thomas L. Spray, MD, Chief of Cardiothoracic Surgery, performed the arterial switch operation to treat Chase's TGA. When the surgery was over, Dr. Spray visited the delivery unit to tell Eva and Jonathan everything had gone well.
As Chase continued to recover after the arterial switch operation, Eva was discharged. “I didn't want to leave,” she recalls. “My mom was with me and she said, ‘Eva, look around.’ I looked around the room and saw a room full of nurses. Mom said, ‘Chase has five mothers. He’s in good hands.’ She was right.”
After two weeks, Chase came home. Today he is a thriving baby. The family will continue to have a variety of supports at CHOP. Chase has also been diagnosed with supraventricular tachycardia (a rapid heartbeat), and he and his parents visit Chase’s primary cardiologist, Jeffrey R. Boris, MD, once a month for now. Those visits may become less frequent as Chase grows older. Dr. Boris sees Chase at the CHOP Pediatric & Adolescent Specialty Care Center in Bucks County, one of over 10 locations where the Cardiac Center offers outpatient services in the community.
Chase will also be a patient of the NeuroCardiac Care Program (NCCP). As a group, children with complex congenital heart defects who have had heart surgery as infants are at a higher risk for neurodevelopmental issues when compared to children without congenital heart defects. The NCCP team includes cardiologists, neurologists, physical therapists and support staff who evaluate patients as they grow, so problems can be caught quickly and addressed.
Eva and Jonathan are happy to know their relationship with CHOP will continue. “We wake up each day so thankful for our precious baby, with his precious heart beating strongly,” Eva says. “Being a parent is the greatest gift. We are thankful that CHOP is in our backyard and that our son has the best care in the world.”
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