Playing with friends, learning at school, joining groups and just having fun — it’s what parents expect for their kids. Families of children with congenital heart defects want that, too. Here are some trustworthy resources that kids with heart conditions and their parents can turn to as they grow.
[See: 5 Rare Diseases You’ve Never Heard of Until Now.]
NICU Nurses
You’ve just given birth, learned your newborn has a serious heart defect and will require ultra-delicate surgery. You’re shocked and distressed as your infant is admitted to the neonatal intensive care unit, placed on a heart monitor and treated through tiny intravenous needles. You’re confused by terms such as atrial-septal defect and coarctation of the aorta. Most of all, you’re concerned: “How is my baby? What’s going to happen next?”
At your child’s bedside 24/7, NICU nurses are highly available to answer all your questions. Specially trained to care for children with heart conditions, these registered nurses help parents understand exactly what’s happening and how to gradually take on their child’s care and get ready to go home.
Child Life Specialists
As part of the health care team, child life specialists work with parents coming to terms with their child’s heart diagnosis. Child life specialists provide emotional support and help parents navigate the unfamiliar hospital system. They strive to reduce parents’ stress and anxiety.
As kids return to the hospital for follow-up procedures, child life specialists work with them directly, communicating in simple, reassuring language. They welcome kids to special playrooms that provide normalcy and a nonthreatening environment.
Letting kids be kids is important, says Kristin Diezel, a certified child life specialist at Boston Children’s Hospital. “Every kid is unique and nobody is defined by their medical condition in that aspect,” she says. It’s about letting kids lead their daily lives and engage in activities, she says. “And being able to play, because play is the language of children.”
Diezel has some extra insight — she grew up with congenital heart disease. She’s had a variety of complex cardiac conditions, which she lists: “I was born with an atrial-septal defect as well as a ventricular-septal defect,” she explains. “I am double-outlet right ventricle and my left and right ventricles are reversed. I’m also dextrocardia. And when I was born I had mitral valve regurgitation and pulmonary stenosis.” In short, all these conditions meant she started life with abnormalities of both her heart anatomy and function, necessitating multiple surgeries.
Family and Friends
Parents often feel overwhelmed as they focus their energies on their vulnerable child’s health. Extended family and friends can help in practical and nurturing ways.
Online communication tools can be extremely useful throughout a family health crisis. Websites such as CaringBridge and PatientsLikeMe offer invitation-only forums for connecting families and friends. They keep loved ones in the loop about current developments. They allow users to coordinate offers of assistance such as babysitting siblings, preparing meals, running errands and accompanying parents to stressful medical appointments.
Thirteen years ago, Amy Basken and her husband brought their son Nicholas home for the first time after his birth with a serious heart condition. She still recalls a welcoming act of kindness: “My neighbor was phenomenal,” she says. “She gave us a care packet with chocolate, which was the best thing ever.”
Peers and Support Groups
Nobody “gets it” like others in similar situations. At different stages, Basken says, “by and large, peer-to-peer support was the most helpful. Having someone who had already been there and could listen without judgment.”
Basken is now director of programs for the Pediatric Congenital Heart Association. PCHA provides a way for families to connect and share their experiences. The association’s website offers a wealth of information on child development, school resources, teen topics, the transition to adulthood and finding expert care.
Social Workers and Therapists
Social workers help “tremendously,” Basken says. “My experience has been that social workers help with the whole person. They’ll help if you’re having financial issues or psychosocial issues, and connect you to [local services]. They’re vitally important for that.”
When families must be far from home during hospitalizations for cardiac treatments, social workers help parents figure out nearby accommodations and assist with other concerns.
On a different level, “the school social worker can help if your child is having adjustment issues at school because of their condition, or if kids are teasing them,” Basken says. “They’re definitely a resource I would look into if there are emotional things going on.”
Physical therapists and occupational therapists may make home visits when children are young. They can suggest play activities and other ways for parents to promote kids’ healthy development.
[See: Best Hospitals for Pediatric Cardiology & Heart Surgery.]
School Staff
Ideally, educators and parents work together to empower kids to do well at school. “Most children can be very successful in a normal school district,” Basken says. “It does take some advocacy. It does take talking to your teachers and the nursing staff at school, sometimes even the principal.”
Parents learn to speak up about their child’s individual strengths and needs, and work with counselors on individualized education plans and other interventions to maximize their child’s learning environment.
Physical educators, coaches and extracurricular coordinators run programs that encourage kids to be active. “When I was younger, I engaged in a number of physical activities,” Diezel says. “I danced growing up; I was in show choir. I was able to keep up with my friends in the pool and all that kind of stuff.”
Camp Programs
A handful of summer camps offer a recreational experience for kids with heart conditions. “Camps are one of the neatest resources, especially for older children with congenital heart disease,” Basken says. It’s a chance to meet other kids with similar experiences, daily challenges and even surgical scars. Camps have medical personnel on-site, she notes, which is reassuring for parents. Family camps also include parents and siblings. Programs scattered across the U.S. include Camp del Corazon (California), Camp Joyful Hearts (Clarksville, Ohio) and Camp Luck (Charlotte, North Carolina).
[See: Best Children’s Hospital National Rankings.]
Self-Reliance
Gaining independence and building healthy routines is part of the transition to being an adult living with congenital heart disease. During graduate school, Diezel says, keeping up with classes and everyday activities kept her going, giving her a focus beyond thinking about and dealing with medical issues. “Having that kind of outlet lets someone feel like their normal selves,” she says.
Diezel stays busy in her work as a child life specialist with the Autism Spectrum Center at Boston Children’s Hospital. For recreation, she enjoys skiing, taking walks and going to the gym. For anyone with congenital heart defects, she notes, it’s important to do physical activity, as appropriate, to keep the heart strong.
She offers a message of empowerment. “Taking advantage of every day and enjoying every moment is really important,” she says. “And not limiting yourself, or not thinking CHD is going to stop or hinder anything — and knowing you can have those dreams and you can continue to pursue those dreams.”
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Resources for Families Dealing With Congenital Heart Disease originally appeared on usnews.com
