From the moment you receive the diagnosis, Child Life On Call has parents who want to share their journey with you. You’re not alone.
One of the most searched phrases from people who go to Google for answers about parenting and congenital heart defects asks this question:
Do congenital heart defects run in families?
After speaking with hundreds of families on the podcast cast and clinically, I know the undertones of this question all too well: Is my child’s diagnosis my fault?
The simple answer is no, and here’s why:
According to StanfordChildrens.org, Congenital heart defects (CHD) are a group of conditions that affect the heart’s structure and are present at birth. While genetic or environmental factors can cause some CHDs, many cases occur in families with no known cause.
The exact cause of CHDs is unknown, but there is evidence to suggest that genetics may play a role in some cases. Studies have found that parents who have a child with CHD are more likely to have another child with the same condition. However, it is essential to remember that this does not mean that it’s the parents’ fault. Many cases of CHD occur for unknown reasons and there is no way for parents to prevent their children from developing these conditions.
#108 Listen to Melissa’s Story: A son with Transposition of the Great Arteries
What do other CHD families want new CHD families to know? We’ve taken stories from parents on the podcast and integrated the latest research in the field to tackle this important question.
Will my child survive this?
As a result of dramatic advances in the medical and surgical management of CHD, 85% of infants with CHD are now expected to survive to adulthood, and CHD is regarded as a chronic disease rather than a terminal one. Source: healthychildren.org
If you feel like you’re more of a medical caregiver than a parent some days, you’re not wrong.
Over and over again on the podcast, parents describe that being thrust into medical parenthood is like getting a crash course in medical school. Except you didn’t apply and you are expected to thrive.
Other parents want you to know this: Learn as much as you can in those early days. Call on members of your community. Lean on healthcare resources. Ask as many questions as you can. Knowledge is power.
#34 Listen to Jamie and Katie’s Top 10 Suggestions for Parents during Heart Month (Jamie was born with Tetralogy of Fallot and you can listen to her and her mom share their story here).
The feeling of uncertainty lurking around the corner is experienced by other parents, too.
For parents of children with CHD, living in a state of persistent uncertainty can be both difficult and unavoidable. Appointments to the doctor may bring up old memories as well as brand new fears – especially considering that even after all necessary procedures are complete, there is still no guarantee for the future health outcomes their child will face over time.
It’s natural for you to battle fear and apprehension on this journey; however, support from other families who have walked your path can provide solace along the way! Talking with or listening to stories from those families gives these parents strength during times when they feel overwhelmed by uncertainty.
#24 Listen to Jade-Marie’s Story: A daughter with Hypoplastic Left Heart Syndrome
#76 Listen to Cortney’s Story: A daughter with Hypoplastic Left Heart Syndrome
If you’re not completely comfortable explaining your child’s heart defect, you have every right to ask your care team for more information.
In 2004 there was a cross-sectional study that looked at how well parents understood their child’s heart defect. After conducting the research, it was discovered that parents of kids with congenital heart disease don’t have the full picture when it comes to understanding their child’s condition. A revamp of the educational program is needed so both moms and dads can understand better what their little ones are going through – gaining more knowledge means they’ll be able to talk about this topic accurately and compassionately with them.
#109 Listen to Dimitra’s Story: A son with Transposition of the Great Arteries and Coarctation of the Aorta
#136 Listen to Jamie’s Story: A daughter with Tetralogy of Fallot and Limb Loss
Caring for yourself first may be the best thing you can do for your child.
Parenting isn’t easy– we all know that! More often than not, parents on our podcast reflect and wish they had been kinder to themselves when starting out their journey. Whether is was asking for assistance or learning the art of self-care like catching a few extra zzz’s here and there or using ‘no’ as an answer sometimes; it would have made life with kids just a little bit easier.
#146 Listen to Caryn’s Story: A daughter with ALCAPA
It’s important to remember that you’re not alone when it comes to the diagnosis of a congenital heart defect in your child. Connecting with other parents and families who have gone through the same experience can help you to feel supported.
As a reflection of care for CHD families, Child Life On Call has brought together stories from parents on the podcast, integrating the latest research in the field to answer the question – what do other CHD families want new CHD families to know?
So if you’re part of this community, always remember — there’s somebody out there just like you looking for encouragement and understanding. Remember too that this is an emotional journey and it will take time to face each of its twists and turns; but it is an incredibly rewarding experience too. If you are ready to seek guidance and support from other CHD parents, then listen to Child Life On Call and be comforted by those living with and supporting a child with a congenital heart defect every day.
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