Stacey Snellenbarger remembers what it felt like to be all alone with a sick child. She wasn’t really alone, of course. She had her husband, Ross; her parents; her medical care team at Riley Hospital for Children.
But when you’re the parent of a desperately ill infant, born with what amounts to half a heart, that feeling of aloneness can be overwhelming.
Her daughter, Amy, was born with hypoplastic left heart syndrome (HLHS), a severe congenital heart defect in which the left side of the heart is underdeveloped. Amy had her first open-heart surgery when she was a week old, her second at 8 months.
For the first 11 months of her life, she had to basically live in a bubble – isolated from the outside world for fear of germs that could compromise her condition. Snellenbarger took a leave of absence from her job as a registered nurse to stay home with her daughter. It was an agonizing time.
Do you have a child with a congenital heart defect? Click here to take a short survey.
Fast forward five years and Amy is a busy 5-year-old. She plays soccer and baseball and loves to dance. But she’s not healed.
“Her surgeries (three in all) were basically a Band-Aid,” her mom said. “They’re called palliative surgeries because they’re just to get them through until either their heart fails or they get a transplant or something better comes along. She’s not fixed by any stretch, but she’s maintaining.”
One thing Snellenbarger has learned during her daughter’s health crisis is how important the support of someone who has walked the same road can be.
She talked with Dana Hartman, nurse practitioner and coordinator of the home monitoring program for Riley’s Department of Pediatric Cardiology, about building a stronger network of support for parents.
“I get to know our families really well, because I’m their contact during a really stressful time,” said Hartman, who helped monitor Amy when she was a baby. “It’s really exciting to be able to help parents and get others involved.”
The hospital established a parent mentor program to pair new parents of high-risk cardiac patients with someone who’s been through it. All of the volunteer mentors are trained at Riley.
But the goal is to reach many more parents, and not just in Indiana.
A survey designed to identify particular stressors for parents of congenital heart patients is going live today, and Hartman hopes it will be shared far and wide.
“The survey came out of our hope to support our parents of children with any type of congenital heart disease, not just high-risk babies,” she said. “The survey will be shareable, so we will not only be looking at Riley families, but any family with a child with heart disease. Our hope is to have a large volume of responses, to present and publish this information, and, most importantly, to use it to help us better support our parents.”
The survey, approved by the hospital’s Institutional Review Board, takes 10-15 minutes to complete. It includes questions on managing family and work obligations when a child is ill, financial concerns, emotional needs and communicating with a spouse or friends. The survey is anonymous, and no personal information is collected.
The survey will be accessible for a year. At that point, responses will be studied to inform future programming for parents. That information can then be shared with other hospitals.
Snellenbarger is glad to serve as a parent mentor herself and hopes the survey collects enough data that translates into more programming and information for parents.
“We knew we were not the only ones (with HLHS), but it’s a pretty rare heart defect,” she said. “Many people are doing what doctors and nurses don’t want them to do and they’re Googling it.”
The result, she said, is you never hear the good stories.
“You never find the hope, you never find the other kids who are doing great. You only see the bad. We’re not telling everybody it’s sunshine and roses, but we want there to be more hope out there.”
To hear those stories of hope and to talk to other people who have been on the same journey are essential for a parent’s sanity, she said.
“It’s not all doom and gloom.”
-- By Maureen Gilmer, IU Health senior journalist