Navigating through your child’s diagnosis of a congenital heart defect (CHD) can be overwhelming. It's not just the shock and confusion of the diagnosis but also the practical matters of care, finance, and emotional support. Fortunately, there are numerous national and online support groups, charities, and resources available to aid families on this journey. They provide a sense of community, advocacy, education, and tangible resources, offering hope, comfort, and assistance.
National and Online Support Groups
One of the best ways to find emotional support and understanding is through communities that share similar experiences. National support groups like the American Heart Association and the Children's Heart Foundation offer resources and programs for families impacted by CHDs. They provide educational materials, advocacy for research funding, and events for awareness-raising.
Online support groups can be an invaluable resource as well, allowing you to connect with others regardless of location. Websites like Daily Strength and Inspire host a variety of forums for different conditions, including CHDs, where you can seek advice, share experiences, and provide mutual support.
Saving tiny Hearts Society
The Saving tiny Hearts Society (StHS) is a not-for-profit organization specifically focusing on funding the most promising research for the diagnosis, treatment, and prevention of CHDs. They strive to bridge the gap between medical research and early-stage innovative breakthroughs. In addition to funding research, the society provides information and resources to help families affected by CHDs.
Personal Experience: Our family has been involved in the StHS since our son’s birth. We have attended several of their Gala’s in Chicago and have had the opportunity to meet amazing cardiologists and surgeons from around the country, doing remarkable advances in research. We also have met Brett Bairer and Charles Tillman, both of whom are among American celebrities caring for a child with a congenital heart defect. We have held 5k races, virtual runs, and 80’s Dance Party and Family Game Night to raise money for this organization and have donated close to $50,000 since 2015.
Flying Horse Farms
Flying Horse Farms offers therapeutic recreation for children with serious illnesses, including CHDs. Their goal is to give kids a chance to enjoy a camp experience in a medically safe environment, free of charge. This provides an opportunity for children to escape their diagnoses for a while, build friendships with kids going through similar experiences, and foster resilience and self-confidence. The entire family can benefit from the renewed energy and optimism these experiences bring.
Personal Experience: In 2019, we attended a “Family Camp Weekend” with other families of children with heart defects. For the first time in our son’s life, we felt like we could breathe and “be normal”. The entire camp staff were trained professionals with world-class medical facilities onsite - yet you would have NEVER known! We enjoyed singing, dancing, and games, and zip lining, and roasting marshmallows, and helping to serve dinner. I cried for three days after we left…we were only there for two days! This camp is located in Mt.Gilead, Ohio, and is one of several camps in the Serious Fun Network of camps for children with differing abilities.
Mended Little Hearts
Mended Little Hearts (MLH), a nationwide organization, provides support to parents, caregivers, and families of children with heart defects and heart disease. They offer peer-to-peer support through an extensive network of local chapters, online communities, and educational resources. They also advocate for policy change, provide care bags to families in hospitals, and host awareness events.
Personal Experience: The first group I joined was my local chapter of MLH. I have found that people often join when their children are small. Since the groups are locally organized, it gives a huge opportunity to bond with and grow through similar challenges together. You become very engaged, connected, and invested in rooting for one another.
Ollie's Branch
Ollie's Branch is a unique resource dedicated to supporting families affected by CHDs. Named in honor of their son, Ollie Hinkle, the initiative provides a platform for parents and caregivers to share their experiences, advice, and encouragement. Their mission is, "to address the unmet needs of heart families while transforming the future of pediatric heart care." Through its interactive map, families can be matched with a local therapist, offering counseling services free of charge to any family member impacted by CHD.
Personal Experience: For a long time I had considered finding a therapist to help process through the trauma of what I had gone through in watching my son undergo four heart surgeries, trouble eating, endless doctor’s appointments, challenges sleeping, and dealing with anxiety. Finally, after learning of Ollie’s Branch, I decided to take the leap. Not only did they connect me with a therapist and provide many complementary therapy sessions, I have continued working with that professional on an on-going basis.
Getting Involved with Others Who Understand is Important
More studies need to be completed to show the value of a social connection with others who "get it". Until then, I will speak from experience. Raising a child with a complex medical condition can feel isolating. We believe that no one wants to hear the highlights of our story, let alone the daily struggles. It isn't that they do not care, the human brain is just wired for a "beginning, middle, and end" of the story to understand.
Complex situations, especially medical ones, don't fit neatly into those buckets. Our stories are winding roads that can induce flight or fight response several times per hour. Going through that is exhausting and sharing it with someone who doesn't understand, is even more tiresome. We feel like a burden, like we are negative, or like we want to be seen as a martyr. None of this is true, of course, but connecting with people and organizations who have been in the trenches alleviates the need to "explain".
Getting involved with charitable organizations also provides a feeling of doing something, when one can feel so helpless. It provides an outlet for energy release that can have a positive impact on others. It can also feel good to know that your experiences can help others and makes the journey feel more worthwhile.
Other Charities
There are a host of charities that work to improve the lives of those affected by CHDs. These include the Pediatric Congenital Heart Association which advocates for high-quality care for those with CHDs; HeartGift, which provides life-saving heart surgery to children from around the world where specialized medical treatment is either scarce or nonexistent; and Camp Odayin, a residential camp for children with heart disease. They also offer online chats and get-togethers for children of varying ages to come together throughout the year.
PCHA – Pediatric Congenital Heart Association
The Pediatric Congenital Heart Association (PCHA) is another organization to consider. Their mission revolves around “Conquering Congenital Heart Disease.” PCHA brings patients, parents, providers, and partner organizations together to improve quality and outcomes through CHD education, support, research, and awareness.
HeartGift
HeartGift is a unique charity that partners with hospitals and physicians to provide life-saving heart surgery to children from underprivileged countries. They bring children to the U.S., where they receive surgical treatment and comprehensive medical care they otherwise wouldn't have access to. This opportunity not only saves lives but also gives these children the chance for a healthier future.
Camp Odayin
Camp Odayin offers children with heart disease a unique opportunity. They provide a residential summer camp, a winter camp, and a family camp that gives these children a chance to feel normal, make friends, and participate in activities that they might typically be excluded from. The camps are staffed with volunteer pediatric cardiologists and nurses to ensure that all campers receive the medical attention they need while enjoying their time.
Online Forums and Social Media
Online platforms can also provide an accessible and instantaneous support system. Websites like The Mighty, BabyCenter, and Healthy Children have forums for parents dealing with a CHD diagnosis. These forums allow you to ask questions, find comfort in others' stories, and receive advice from those who have walked a similar path. Social media platforms such as Facebook have numerous groups dedicated to families dealing with CHDs, where stories, resources, and moral support are readily shared.
There is substantial research showing the benefits of online groups or forums for caregivers. A study called "Benefits and Drawbacks of Online Support Groups" published in the Cyberpsychology, Behavior, and Social Networking journal finds that participation in online support groups can lead to emotional support, experiential information, and social comparison.
For caregivers specifically, a study titled "An Exploration of Social Circles and Prescription Drug Abuse Through Twitter" in the Journal of Medical Internet Research found that social media platforms like Twitter could play a crucial role in forming communities where caregivers can share information and experiences, offer and receive support, and feel less isolated.
Another study, "The Experience of Caregivers Living with Cancer Patients: A Systematic Review and Meta-Synthesis" in the Journal of Personalized Medicine observed that online support could play a significant role in reducing stress, providing a space for venting emotions, and helping caregivers gain a better understanding of their role and the medical condition in question.
While these studies aren't specifically related to caregivers for children with heart defects, their findings are broadly applicable to any caregiving situation. It's reasonable to extrapolate that caregivers for children with a heart defect could receive similar benefits from online groups or forums, as these platforms offer a sense of community, shared experience, and emotional support, regardless of the specific condition being managed.
Conclusion
Living with a congenital heart defect or caring for a loved one with a CHD is an incredible challenge. However, it's important to remember that you are not alone in your journey. A diagnosis of CHD is not a solitary experience. There are countless resources available to provide emotional, financial, and practical support.
National and online support groups, charities, and resources such as Saving tiny Hearts Society, Flying Horse Farms, Mended Little Hearts, Ollie's Branch, the Pediatric Congenital Heart Association, HeartGift, and Camp Odayin are just a few of the organizations dedicated to helping families navigate this journey.
Remember, it's okay to reach out, ask for help, share your experiences, and lean on these resources. Many times, your pediatric cardiologist or the hospital care team may be able to provide you with information as well. By doing so, you can find a community that understands your journey, bringing comfort and strength in even the most challenging times.
As you navigate this journey, remember that there is always hope, and there is always support available. You are not alone.