The investment in CHD research and innovation is “woefully inadequate,” said Geva and many of the parents interviewed for this article, which is why CHD Awareness Week, Feb. 7 to 14, is so important. Here are eight things families on heart journeys want you to know.
There’s a lot of hope. “When I first found out about her CHD, I thought life as we knew it was over. I felt like I was living a nightmare and our lives would never be as happy again,” said Karissa Whisner of Heath, Ohio. Her daughter, Maci, was diagnosed with hypoplastic left heart syndrome (HLHS) prenatally. “More than anything,” Whisner said, “I was so scared to see my child suffer.” When Maci was born, her parents were told that her heart complications were too complex to be operated on, and she was brought home on hospice care. Fortunate events led them to Boston Children’s Hospital, and Maci is now a thriving 2-year-old who will have her third surgery later this month.
“The message really is very optimistic and upbeat in the sense that to die these days in the first year of life from congenital heart disease is very uncommon,” Geva said. Though Boston Children’s treats patients with the “worst of the worst” cardiac abnormalities, he said, the survival rate in its cardiac intensive-care unit is 97 percent.
Looks can be deceiving. Often, children with CHD don’t appear outwardly sick. “Henry may look healthy and appear just like any other 2-year-old boy, but inside his heart is fighting a big battle every day,” said Stephanie Johnson of Woodbury, Minn. “CHD doesn’t always have a physical identifier. Our children’s battle scars are under their shirts.”
Beckie Reilly of Fairfax, Va., agreed. Her almost-15-year-old son was diagnosed with HLHS in 2004. Three open-heart surgeries later, “you would never know that [Collin] had heart disease,” Reilly said. HLHS is a congenital defect in which the left side of the heart doesn’t form correctly. Despite that, Collin plays basketball and, during a recent stress test, learned that his single ventricle performed nearly at a full heart’s rate.
Getting sick poses risks. A minor illness could lead to hospitalization for kids with CHD. When Maci caught a stomach bug that normally would cause only a low-grade fever and diarrhea, she ended up in the hospital. “Maci had developed a urinary tract infection from the diarrhea, which progressed to a kidney infection and kidney damage,” Whisner said.
Johnson said: “During cold and flu season, I often have thoughts weighing if the risk is worth the reward of taking Henry somewhere, from a play date to the grocery store. But I remind myself that Henry has fought hard to live this life and I am not here to limit him. One of the greatest gifts I can give my son is a normal childhood.”
Heart battles are expensive even with comprehensive insurance coverage, and taking care of a child with CHD takes a lot of time and energy, in addition to money. Johnson chose to stay home to care for her son, which had a big impact on her family’s finances. “Even on my husband’s income alone we do not qualify for any sort of medical assistance,” she said. “Between my lost income, insurance out-of-pockets, therapies, hospitalizations, doctor visits and prescriptions, it’s definitely been a financial challenge.”
Whisner takes an all-of-the-above approach to dealing with the expense of her daughter’s care. “Through help from our family, friends and community, payment plans, hospital forgiveness plans, reevaluating what we actually need and downsizing, we have been able to get all the best care for our daughter and live a comfortable, happy life,” she said.
Trust your intuition and get your baby tested if you think something’s wrong. According to the American Academy of Pediatrics, screening for critical congenital heart disease is mandated by law in 36 states and the District of Columbia, and the other 14 states have regulations or guidance on the books. The test, which analyzes blood oxygenation with a noninvasive monitor, can be lifesaving but is not perfect.
When the test doesn’t catch a critical cardiac anomaly, intuition becomes vitally important. Seemingly perfect babies can have an undiagnosed heart condition, and the only apparent symptoms are poor feeding, excessive sleeping and generally being unwell. Debi Lewis’s daughter was 14 months old before she was diagnosed with a double aortic arch. Lewis, of Evanston, Ill., knew something was wrong, and her intuition as a mother kept her pushing for answers. “I spent the first year being told I had postpartum depression when I said I thought something big was wrong with my daughter,” she said. Her daughter has had two corrective surgeries.
Congenital heart disease is a lifelong diagnosis. One of the biggest misconceptions about CHD is that surgery is a cure. For some CHDs, surgery can correct problems or create workarounds, but that diagnosis should always be taken into consideration. Lewis was told her daughter’s surgery was a “one and done” repair, but when the girl was 8, doctors realized that the medical issues she was experiencing were related to her CHD. “We had a several-year detour into gastroenterology, which, it turns out, was unnecessary and dangerous,” Lewis said. The second surgery seems to be curative, though she’ll be on the lookout for symptoms for the rest of her life.
With more-complex heart problems, surgical interventions can improve heart function and give children the chance to live, but they will never be cured or fixed. A heart transplant is also not a cure. In an otherwise hopeless situation, Geva said, it can be a lifesaving procedure, but it’s replacing one set of problems with another.
Sharing these stories is important to raise awareness, advance funding for research and show that these kids are more than their disease.
“I want to put a face to the diagnosis and let people see how lovable she is and how worth it it is to fight for these children,” said Whisner, who shares updates about Maci on the Facebook page Maci’s Mended Heart. “We need people to realize this so we can raise more money for research. More awareness and research means more treatment options and maybe even a cure one day."
Lewis made the decision to blog and write about her daughter’s CHD to help families going through similar journeys.
There are many ways to show your support. You can share a Facebook post to raise awareness or donate money to offset expenses, bring a hot meal or offer child care for siblings. Support can also be as simple as taking the time to wash your hands when coming close, asking how a child is doing or gaining a better understanding of a child’s disease. These battles can be long, lonely and scary, and sometimes just saying “I’m here” is enough.
Shana Westlake is a freelance writer based in Rockville, Md. Find her on Twitter @ShanaWestlake.
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