In February, the American Heart Association brings awareness to heart issues, focusing special attention on Congenital Heart Disease and Defects the week of February 7-14. In our family, we not only celebrate my little peanut’s birthday, but also that she is that 1 in that 100 and is 0ne year medication free!
Heart Defects are the most common of birth defects, and in the US, that means about 1 in every 100 births.
Every “Heart Mom” has a story. A story of diagnosis, fear, tears, appointments, and strength. I can recall every single moment and conversation that happened the day we found out about about my daughter’s cardiomyopathy diagnosis. To be totally honest, this is something that our family has kept, well, close to our hearts. Sharing your child’s disease and diagnosis is a very personal decision and I’m thankful for others who have shared their stories with me, because I now know several moms that I could call on for questions or just share with someone who understands what I’m feeling.
Here is our story::
- 4-month Echocardiogram
When Little H was born she had a murmur that was significant enough for her pediatrician to recommend her first echocardiogram at one week. We discovered that she had two small holes, but the cardiologist was confident they would close on their own. At her three month follow up with a pediatric cardiologist she had a repeat echo done where after the tech was done the cardiologist came in and told us that the holes had indeed closed but a new problem had developed, she has cardiomyopathy and that she was referring us to a specialist who would take over her heart care.
After diagnosis of we chose not to share with many, mostly because we had a lot of questions and very few answers. I’m the kind of person that wants to know every detail and all of the possible outcomes (no, I don’t like surprises!). My husband is the opposite, he didn’t want to know anything more than “what it is.” What the doctor said was enough information for him. The little bit of information we were given was all he wanted to know.
We were both so terrified of what the future may or may not hold for our daughter. We had to wait a week between our diagnosis and meeting with her specialist, that is a long time for me to not know anything! Patience and letting go of control are hard for me in a normal situation…So, of course, I did a ton of research and internet searches where I got bogged-down and overwhelmed by data, facts, figures, and statistics . . .
If I could rewrite our story::
The tremendous amount of data and statistics available for the disease were hard for me to interpret. I didn’t truly know the extent of my child’s situation, and it seemed like the worst case scenario was always readily available. I wish I had asked a family member or friend to do the research for me and just give me the highlights. Sometimes too much information can slow you down, scare you, and stress you out just as much if not more than as not enough information.
When we told our friends and family about Little H’s diagnosis we specifically said to not google it, do not do the research because the information can be scary.
It took me several visits and a long late night conversation with Little H’s cardiologist over her personal cell phone that I was, finally, able to put my full trust and faith into her hands. I knew that no matter the question I could reach her and that was what was important to me.
Are you a Heart Mama, wondering what to do after little one’s diagnosis of Congenital Heart Disease? There are resources and support available:
Having a child with Congenital Heart Disease is different from family to family and it can be scary, but know that you are not alone in this journey
We are lucky to live so close fabulous doctors specializing in pediatric heart conditions. We have access to amazing doctors and hospitals who can provide the best care and will come alongside parents, providing information, resources, and support. I have learned to trust your doctor and, if you don’t, ask for a second opinion. Ask your cardiologist about support groups, talk to a friend or family members, and form a community to help you navigate through the difficult times.
Together we can all support Heart Moms.
Visit the American Heart Association’s website for more information about CHD.
