My life transformed on December 24, 2010, when our daughter was born with a serious congenital heart defect (CHD), marking the beginning of my journey as a Heart Mom. Just hours after her birth, she was moved from our local NICU to a cardiac intensive care unit in another state. Her first 66 days were spent in the hospital, and by the time we brought her home, she had already undergone one open-heart surgery. At eight months old, she faced her second surgery, and by 20 months, we were informed that a third was imminent. Fortunately, we discovered a doctor who was able to perform a procedure that postponed the need for another surgery. Now, at five years old, she is thriving, though we know more surgeries will come.
In 2015, we welcomed our son, whose prenatal scans indicated a healthy heart. We were ecstatic, but at two months old, we learned he was also born with two congenital heart defects. While these are not as critical as our daughter’s, they are still CHDs, and our journey continues.
Being a Heart Mom is filled with emotional highs and lows. Unless you’ve experienced it, it’s hard to understand the challenges involved. Here are six crucial points to consider about parenting a child with a congenital heart defect:
1. You’re Not Alone
Congenital heart defects are the most prevalent birth defects, affecting approximately 1 in 100 children. This means that many people in your social circles—friends, family, or acquaintances—might be touched by this condition. I was unaware of how widespread CHDs were until they impacted my family.
2. Anger is Natural
While I don’t take pride in it, there are moments when I feel anger regarding the congenital heart defects affecting my children. The feelings of “Why us?” were particularly intense in the early days after my daughter’s birth, especially when I had to wait days to hold her or feed her. Though these feelings have lessened over time, they still occasionally resurface.
3. A Unique Connection
There exists an unspoken bond with other Heart Moms that is incredibly powerful. I’m grateful that I had friends who were also Heart Moms, as their understanding helped me navigate my emotions. These connections allow a level of empathy that others simply cannot provide, making it easier to share fears and experiences without extensive explanations.
4. An Ongoing Journey
Living with a congenital heart defect is a lifelong commitment. There is no definitive “cure.” Even in instances where no further procedures are necessary, regular cardiologist visits will inevitably bring back memories and new concerns. For instance, my daughter had a procedure in 2012 that delayed her next surgery. We were told she would need it within 18–24 months, and now she is at 56 months and still thriving. Meanwhile, we are in a wait-and-see phase with our son until his next appointment.
5. Our Children are Heroes
Our kids are truly remarkable. My daughter has encountered more challenges in her five years than many adults do in a lifetime, yet she remains one of the happiest children I know. Their resilience and fighting spirit inspire us all. They are the real Heart Heroes.
6. Acceptance and Growth
While I would do anything to alleviate my children’s struggles, I recognize that they are in our lives for a reason. They have transformed me and taught me invaluable lessons about courage, compassion, and unconditional love. I wouldn’t change a thing about them.
To all the other Heart Moms and Dads, and parents of children with chronic medical conditions, remember you are not alone. No matter your circumstances, there are others who truly understand your journey and emotions. Don’t hesitate to seek support when you need it; it can make a world of difference. For further reading on navigating family planning, check out this resource. For more in-depth information, visit here as they are an authority on this topic, or explore Mayo Clinic’s guide on pregnancy and home insemination.
In summary, parenting a child with a congenital heart defect brings a blend of challenges, emotions, and profound connections. Every moment is a testament to love and resilience, shaping not just the children, but the parents as well.