By Kimberly Olsen
Katie Mooshian remembers getting the call that changed her life. Her unborn child, the caller said, had hypoplastic left heart syndrome. “I had my husband pull over to the side of the road, and I just broke down,” she remembers.
Today, prenatal diagnosis of CHDs is common. “That’s a good thing in terms of medical care, but it adds a layer of stress during the pregnancy,” says Cheryl Brosig Soto, Ph.D., a licensed clinical psychologist who is specially trained in pediatric psychology at Children’s Hospital of Wisconsin.
Katie certainly felt that added layer of stress. She was fearful to give birth. “I was scared to death,” Katie says.
Her son Charlie was born on November 30, 2012. Within days, he had the first of three heart surgeries. Doctors were able to explain anatomically what was happening. Friends and family stepped in to help in any way they could. But there wasn’t anyone Katie could turn to who truly understood the fear of sending their newborn off for open-heart surgery.
“Charlie was critical between his first and second surgeries,” Katie remembers. “We were in survival mode, and I really felt isolated.”
Despite her feelings of isolation, Katie is far from alone. One in 110 babies is born with a congenital heart defect. While many heart parents eventually find each other through groups like Mended Little Hearts — and through social media plat – forms such as Facebook — these connec – tions can be difficult to make when you’re in survival mode.
Through Mended Little Hearts, Katie connected with Maryann Mayhood, a neighbor whose son Joseph has a CHD called transposition of the great arteries.
“Lo and behold, here’s another mom in the same situation,” Maryann says. “Your family — grandparents, aunts and uncles — are dealing with their own fears, so you can’t lean on them. To have a friend with this common thing, it’s a bond.” (Both women are now coordinators of the Washington, D.C., Mended Little Hearts group.)
Katie explains why friends and family are sometimes not enough: “We had this amazing community that had gifted time and love to us, but I had to filter every – thing,” she says. “I needed to be able to process the fact that Charlie might die as a child, and I can’t do that with friends and family. My mom says, ‘Oh, bite your tongue.’ I can’t. Having a community that you can talk about that with has been very powerful.”
Other heart parents approach difficult conversations from a different perspec – tive. Laura Joyner, whose 19-month-old son Lincoln has Tetralogoy of Fallot with pulmonary atresia, says, “Lincoln was on a paralytic for a couple weeks, so he was paralyzed. Heart moms know not to say, ‘Well, he doesn’t look sick.’ They understand oxygen levels and G-tubes. What I struggle with is talking to friends and family, but it’s okay to educate them about what you’re going through and how you feel.”
“Finding out that your child has CHD will initially cause fear and anxiety,” says Gerard Martin, M.D., a cardiologist and the medical director of Global Services for Children’s National Health System. “We can teach [parents] what their child’s heart is like and talk about potential corrections. But what’s helpful is putting them in contact with other families who have gone through this.”
In addition to providing understanding, talking with other heart parents can also provide hope and courage during a very confusing period. “Many parents have never heard of CHD, which sets them up to feel so unprepared for this experience,” says Erica Sood, Ph.D., a pediatric psychologist at Nemours/Alfred I. duPont Hospital for Children. “And some medical professionals that they see before pediatric cardiology may not communicate hope or even accurate information, which can be very stressful.”
That was true for Kristin Holmes, whose daughter, Mazzy, has heterotaxy. Kristin and her now-husband, Matt, had been dating for just four months when they received the prenatal diagnosis, along with pessimistic words from doctors. “Doctors give you a lot of medical information, but you don’t understand what life will be like,” Kristin says. “I understand how my child’s heart is anatomically formed, and I understand the surgery, but I don’t understand what life at home will be like.”
While experts have developed models for supporting families in environments like the NICU and pediatric hematology-oncology, the same research and resources haven’t been put toward pediatric cardiology. Previously, pediatric cardiology resources were focused on reducing mortality. However, with advances in surgical and perioperative care, children with CHD are surviving at much higher rates.
“Because of these advances, research and resources can now focus on how well children with CHD and their families are living,” says Dr. Sood. “With this shift, psychologists and social workers have become an integral part of the cardiac team.”
Many hospitals with pediatric heart centers have also come to understand the importance of helping heart parents connect with others who have been in their shoes. They’re tapping into that parental expertise to help create solutions so heart parents can get emotional support when they need it most.
The medical community is turning to parents for advice on how to provide this support. “We’ve started inviting parent groups to work with the American College of Cardiology to improve care,” says Dr. Martin.
Meanwhile, Drs. Sood and Brosig Soto are partnering with parents to develop a family-based, psycho-social care model for CHD, so medical centers and community organizations can better support families.
Their advisory council includes parents from Mended Little Hearts, Pediatric Congenital Heart Association, Sisters by Heart and Brothers by Heart. The council helped them craft questions to ask study participants — a diverse group of 106 heart parents — to understand their struggles and what kind of support is most helpful. The questions were posed via a social networking site, where parents could see each other’s responses (anonymously) and reply. When parents seemed focused on a particular topic, the team asked more questions to delve further. For example, many parents wanted to receive better preparation for the emotional impact of CHD on the family, better preparation for their child’s developmental and feeding challenges, and a more formalized process for making peer-to-peer connections.
The project also involved peer-to-peer support organizations and care providers including psychologists, social workers, CICU nurses and a cardiac intensivist. Based on the data, recommendations for supporting parents and families will be developed. This information will be made disseminated and accessible to parents. Dr. Sood’s research is supported by a grant from the National Institute of General Medical Sciences of the National Institutes of Health (U54-GM104941 [PI: Binder-Macleod]).
Though peer support is vital in the early days just after diagnosis, heart parents continue to support one another throughout their child’s life.
When Maryann’s son began preschool, the teacher suggested therapeutic recreation to help him better socialize. “I immediately had my defenses up and said, ‘He’s fine,’” Maryann admits. “I was thinking, ‘Don’t you tell me he has another problem.’ But I called another Mended Little Hearts mom and she said, ‘Just accept the help. It’s free.’”
Maryann says that her fellow Mended Little Hearts moms give her strength through the ups and downs. “We’re all friends now,” she says. “We’re building this network of moms — and some dads — and now our children can grow up together and feel comfortable when they’re 13 and they take their shirts off and have scars. They won’t be alone.”