Many parents feel alone, anxious, or disconnected from other people when they first learn about their child’s heart condition. This feeling can happen even years later when parents are caring for their child.

Online forums and groups provide CHD parents a way to connect and support one other through every stage of the care journey. This kind of support and mutual understanding is especially important after your child’s diagnosis and during their initial treatment.

Even well-meaning loved ones and medical professionals can struggle to understand the feelings and new realities you are facing. For many parents it is tremendously helpful to connect with other parents who have a child with CHD and share similar experiences.

You can learn what to expect from other parents who have already walked down the path you are starting. These parents can offer important insights about caring for your child – and remembering to care for yourself.

Hearing about the emotions and challenges that other parents overcame may help you feel less alone and more hopeful and encouraged. It’s critical for you to get the emotional support you need to stay strong on this care journey.

Support Groups at Your Hospital

Many children’s hospitals and heart centers have groups on social media that can be valuable resources for connecting with other families and learning about your child’s specific hospital. Your hospital may also have internal support groups or parent mentor programs. These programs may be in-person or online. You can contact your hospital’s social worker, child life specialist, or nurse coordinator to ask if they have peer support programs.

Support Groups on Social Media

On Facebook and other social media platforms there are many CHD parent groups. These groups are not formally organized by a hospital or organization, but they can provide similar support. They may be specific to a particular type of CHD or to a specific geographic area.

In many support groups you are interacting with other parents – not medical professionals. While online groups are a great place to share emotions and experiences with other families, be aware that the content posted in the group may not be moderated and may not be medically correct. When it comes to medical advice, it is important to speak directly with your child’s care team.

Also keep in mind that no two CHD cases are exactly the same. The stories you read about in these groups may not apply to your situation because there are many types of CHD and they each require different levels of treatment. Always talk with your physician if you are concerned about something that you read online.

ONLINE RESOURCESSupport for Parents

These are some of the organizations that support CHD families with online groups and other resources to connect parents and caregivers. Several online groups will work to match you with a parent mentor.

  • CHD Coalition
    Through this community of heart parents and caregivers, you can connect with other families who are on the CHD care journey at local events and through an online network that extends throughout the United States.

  • Conquering CHD
    Through social media, Conquering CHD offers open and closed forums to learn, chat, grow, and ask questions in a safe environment. This includes online groups for teens and adults, and a group en Español. Conquering CHD state chapters give knowledge, voice, and hope, and help directly meet the lifelong needs of patients with CHD and their families through awareness, knowledge, community, and research.

  • Hopeful Hearts
    A foundation that shares stories of children with CHD, helps families by providing financial support, and strives to raise awareness of CHD along with funds for research.

  • Kids With Heart
    A national organization that provides parent matching services for heart families. They also have a nationwide database of support groups and host online social media groups for support and information.

  • Linked by Heart
    A support network for parents who have a child with HLHS, Linked by Heart fosters connections amongst the single ventricle community through regional, online support and by providing local resources to families. They strive to connect families with others in their area for local support and information.

  • Little Hearts
    Support, education, resources, and hope for families affected by CHD. Membership consists of families nationwide who have or are expecting a child with CHD. Join for free to access their resources and connect with other parents.

  • Mended Little Hearts
    An organization that can match you with a parent mentor through a local chapter in your area. They also host online discussion and social media groups.

  • Sisters by Heart
    A support group for parents who have a child with HLHS/single ventricle provides resources on CHD. They send care packages to parents at the beginning of their CHD care journey.

  • World of Broken Heart
    A nonprofit CHD awareness and organ donation organization, their website is a place where families share photographs and stories about their children who have CHD.

Keeping Connected as Your Child Grows

Online and in-person hospital groups can continue to be a valuable source of support and connection as your child grows up. For many families they’re a helpful way to keep up with what’s happening at their child’s hospital after discharge. This can be particularly useful when your child may need surgeries or treatments later in life, or when you live far from your child’s hospital and receive ongoing treatment at a different hospital.

It’s common to see parents post in online groups months or even years after surgery if they want to reconnect with other families who were in the hospital at the same time. You can share concerns and celebrate accomplishment as your children grow. You can also ask questions in preparation for an upcoming surgery, treatment, or check-up.

Connecting With Other CHD Parents

You would be surprised at how many people you already know who have some kind of experience or know someone who’s had a similar experience and are willing to talk about it with you.

Kelly, CHD Parent

PARENT TIPIs Social Media Helping or Hurting You?

Everyone has a different level of comfort with social media and online support groups. While many parents find them helpful, there are many others who are not comfortable communicating with people they don’t know. Some parents also find it distressing to hear about other children’s illnesses.

As you connect with online groups, take time to do a reality check. Notice if you are feeling a sense of community and comfort, or if you have more confusion, or increased fear and worry. It’s okay not to participate in online groups, or to take breaks from social media when you need to. This could mean that you stop reading other people’s stories or stop posting your own experiences.

FAQs

Some parents do cope by reaching out to their loved ones, but others may not want to speak with family or friends because they do not want to worry them or are unsure how they will react. In the same way, while many parents find comfort discussing their feelings with a healthcare provider, other parents do not feel comfortable opening up about their worries or fears with people they see on a regular basis.

The most important thing is to make sure that you are staying connected with people and getting support from others in a way that works for you.

In online support groups you can learn about every step of the CHD care journey. Some parents may be where you are on the journey – whether that’s a new diagnosis or your child’s first surgery – and you can share real-time experiences.

Parents who are ahead of you on the journey can give advice on things like hospital life – such as good questions to ask the care team, hospital rules/policies, what to pack, the best parking lot, a good coffee shop, or a peaceful place to make a phone call.

Austin French, Parent

Sarah Vega Grove, Parent

Alaina Kipps, Physician

Sarah Pekoc, Parent

Linda Pilkinton, Parent

Jodi Smith, Parent

Ellen Zemarkowitz, Social Worker

See the full list of contributors to the CHD Care Compass

Last Update: November 2, 2021

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