My life took a dramatic turn on Christmas Eve 2010 when our daughter was born with a significant congenital heart defect (CHD). That moment is when my journey as a Heart Mom truly began.
Just hours after her arrival, she was whisked away from our hospital’s NICU to a specialized cardiac intensive care unit in a children’s hospital in another state. Our little girl spent her first 66 days in the hospital and had already undergone her first open-heart surgery by the time we brought her home. At 8 months, she faced her second surgery, and by 20 months, doctors recommended a third. Thankfully, we found a specialist who performed a procedure that delayed further surgery. Now, at 5 years old, she is thriving, though we know surgery still looms in her future.
In 2015, our family welcomed our son. All prenatal tests indicated a healthy heart, and we were overjoyed. However, by the time he reached 2 months, we learned he too was born with two congenital heart defects. While they are less severe than our daughter’s, they remain CHDs, and our journey continues.
Being a Heart Mom is a rollercoaster of emotions. For those who haven’t walked this path, understanding our experience can be challenging. Here are six essential insights about being a parent to a child with a congenital heart defect.
1. You are not alone.
Congenital heart defects are the most common type of birth defect, affecting approximately 1 in 100 children. This means many people in your social circle could be experiencing similar challenges. I had no idea how widespread this issue was until it became part of my life.
2. Anger is part of the process.
I’ll admit that I sometimes feel anger when reflecting on my children’s congenital heart defects. Those feelings were particularly intense right after my daughter was born. I often thought, “Why us?” It felt deeply unfair. I couldn’t hold her for the first five days because of tubes and monitors, and breastfeeding wasn’t an option due to her need for tube feeding. While these feelings have lessened over time, they still occasionally resurface.
3. An unbreakable bond exists among Heart Moms.
I’m grateful to connect with other Heart Moms in my friend group. Discovering that I wasn’t alone in my feelings was a relief. The emotions that accompany having a child with a heart defect are complex and unique. No one understands these challenges quite like another Heart Mom. They grasp your fears even when you can’t articulate them. In moments when I struggle to express myself, I find comfort in knowing I have friends who truly understand.
4. The journey is ongoing.
Congenital heart defects are a lifelong condition. There is no definitive “cure.” Even if your child doesn’t require more procedures, regular cardiologist visits can trigger old memories and new anxieties. My daughter had a procedure in 2012 that postponed her next surgery, and although she’s currently doing well, the uncertainty remains. With my son, we’re in a wait-and-see phase, unsure if he will need medical intervention. The waiting can be the most challenging part.
5. Our kids are incredible.
My daughter has endured more in her short life than many adults do, yet she radiates happiness. Despite everything, she rarely cried as a baby. Our children are remarkably resilient and courageous. They are truly our Heart Heroes.
6. We embrace our journey.
While we would do anything to alleviate our children’s struggles, their presence in our lives is meaningful. They’ve transformed me into a better person, teaching me valuable lessons about strength and love. I think they are perfect just as they are, and I wouldn’t change anything about them.
To all the other Heart Moms and Dads, and parents facing serious medical challenges with their children, remember you are not alone. No matter your circumstances, there are others who share your experience and understand your feelings. Don’t hesitate to seek support when needed; having someone who truly gets you can make a difference.
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Summary
Being a Heart Mom is an emotional journey filled with challenges, anger, and an unbreakable bond with other parents navigating similar paths. The effects of congenital heart defects are lifelong, but they also highlight the incredible strength of our children. While we often wish to take away their pain, they enrich our lives in ways we never anticipated.
Keyphrase: Parenting a Child with Congenital Heart Defect
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