If your child is diagnosed with a congenital heart defect—either during pregnancy or after birth—your mind starts to spin with a million questions. Or, you’re so shocked you don’t know what to say.
Either way, the diagnosis is hard enough. It’s harder still to know the right questions to ask. We talked to Dr. Anastasios Polimenakos, chief of pediatric and congenital cardiothoracic surgery, and nurse practitioner Lauren Mathis, to find out.
1. Is my child going to die?
“That’s always the first question,” said Mathis, and the team does everything possible to ensure a good answer to that question. This includes helping moms diagnosed in utero set up a prenatal plan with regular visits to their OBGYN and pediatric heart team. It also involves a birth plan to ensure that they deliver at Augusta University Health, which may include a planned delivery to guarantee all the specialists they require are ready to step in right after birth. That multidisciplinary team features pediatric cardiologists, pediatric heart surgeons and the neonatal intensive care specialists. “We want them to deliver in a safe place so we can provide them all the care they need and give them peace of mind,” said Polimenakos.
For families who don’t live in the area, Ronald McDonald House Charities of Augusta—located literally steps away from the hospital’s entrance—is an essential part of their birth plan, since it can provide a home away from home for these families.
At the same time, the pediatric heart team does share the prognosis and risks. The best advice for parents is to take each day as it comes.
2. “Can you really do surgery on a baby this small?”
“Believe it or not, the majority of patients we treat are infants,” said Polimenakos. “And it’s far better for a child with a heart defect to have surgery in infancy.”
About 35% of heart surgery cases at the Children’s Hospital of Georgia are performed on babies who need immediate attention right after they’re born; another 45% is on infants older than 30 days but younger than 1 year; and another 20% is on children over a year old.
For babies who have heart surgery right after birth, the surgery is palliative—meaning that it provides a short fix for the problem. These babies usually need more than one surgery to repair their heart issue. “More than 45% of children with heart defects need more than one surgery,” said Polimenakos.
3. How can I prepare myself for caring for a child with a heart defect?
“You can definitely scare yourself if you just Google,” said Mathis. The pediatric heart team at the Children’s Hospital of Georgia often shares resources with families, including the Cove Point Foundation (pted.org), which offers detailed, dependable information on pediatric and adult congenital heart disease. The team can also arrange for families to meet with other families who volunteer as heart advocates. Together, they can talk through this new diagnosis, find out what to really expect, and learn about children thriving in adulthood after having heart surgery.
4. How can I bond with my child?
For babies who need surgery right away, the next time parents see their children might be in recovery in the NICU, where they’re in a bassinet, hooked up to wires. Parents might not be able to pick up their babies, but moms interested in breastfeeding can still pump and help feed babies. “You can also take little swatches of clothing that mom has slept with, and place them in the baby’s bed so the baby can have her scent, which is comforting,” said Mathis. “Little things like that can bring some comfort for everybody.”
5. How can I help?
Even though parents might feel helpless, they can do so much to help their children recover and do well after heart surgery. “Parents are part of the care plan,” said Polimenakos. “They are critical.”
For example, parents can make sure to always be at the bedside when the heart team makes its morning and evening rounds so they can learn more about what’s going on and ask questions. Then, when babies go home after surgery, it’s up to parents to take charge of home monitoring. Using a notebook as well as equipment, parents will need to check and record their child’s oxygen levels, weight, healing of incisions, and other statistics. The notebook includes a list of red flags for when they need to call their doctor. It’s a great—and essential—way for parents to be involved. “Parents really become advocates for their child by doing this,” said Polimenakos. “They learn to be experts in their child and feel confident knowing what’s wrong and what’s right. It empowers them to go home and feel in control.”
Between surgeries, parents can also make sure they understand restrictions on their child, especially during flu season. The flu or any infection, even just a cold, could put a child with a heart defect back into the hospital.
6. What’s the biggest challenge?
Seeing your child go through surgery and recovery is tough. Even tougher is what that situation can do to your relationships. Families can also be put under financial stress since children aren’t able to go to daycare or other group care settings where they could catch an infection, which means a potential wage-earner has to stay at home. Families can also feel guilty—that somehow they caused their baby to have a heart defect.
While the pediatric heart team can help direct families to resources to help pay for babysitting as well as home health nursing, “No support system can replace the family,” said Mathis. So nurturing strong family relationships, banishing guilt, and leaning on one another is the best advice.
And despite the challenges, a lot of hope is out there: “We’re getting to a place in congenital heart surgery where children are living well into adulthood,” said Polimenakos. “It’s very different than how it used to be perceived. It’s so common now to see these kids grow up.”