This post is dedicated to raising awareness for Congenital Heart Disease (CHD).
If you had asked me a year ago about congenital heart disease, my response would have been vague at best. I might have shared a few loose details about birth defects and mentioned a friend whose child had undergone open-heart surgery at the tender age of three. I would have talked about how that child was now running around, seemingly healthy and full of life.
But I was wrong—so much wrong—about the truth behind CHD, its prevalence, and the severity of its impact.
Fast forward nine months from that conversation, and I welcomed a beautiful baby boy into the world. Unfortunately, he was born with a purple hue and low oxygen levels. My son, Noah, underwent open-heart surgery just 16 hours after his birth, following a series of misdiagnoses and emergency medical interventions.
On that fateful day, we were repeatedly told to cherish each moment with him, as he might not have long to live. We were blessed to have nearly seven months with Noah, filled with smiles and struggles, as he fought against the odds. But on October 27, he left us far too soon.
This experience has opened my eyes to the urgent need for awareness, funding, and research in the realm of congenital heart disease. Here are ten important points to consider about CHD, shared from the perspective of a mother who lost her child:
- CHD Can Affect Anyone: Regardless of race or socioeconomic status, congenital heart disease can strike any family. Despite doing everything “right” during my pregnancy, I never imagined I would face such a heart-wrenching challenge.
- It’s More Common Than You Think: CHD occurs in about 1 in 100 births, making it as prevalent as autism.
- Our Kids Are Not Defective: One of the most hurtful things I heard was a comment suggesting my son was “sick” because of his heart condition. Such remarks devalue the lives of these children, who are deserving of love and dignity just like any other child.
- There Are Many Types: Congenital heart disease encompasses a wide range of conditions, some more complex than others.
- CHD is More Common Than Childhood Cancer: It’s crucial to understand how prevalent heart defects are in children.
- There’s No Cure: Surgical interventions are often necessary, but they don’t “fix” the underlying issues. Many children require lifelong follow-ups with cardiologists.
- It Affects More Than Just the Heart: Children with CHD often face challenges with other organs, like lungs and kidneys. In Noah’s case, it was complications with his lungs that ultimately took him from us.
- Funding is Lacking: Despite the dedication of many healthcare professionals, CHD remains vastly underfunded in comparison to its prevalence.
- You Can Make a Difference: Consider donating to local congenital heart centers. We contribute to the facility that cared for Noah. You can also support organizations like The Children’s Heart Foundation. If finances are tight, simply sharing this post can go a long way in raising awareness.
- Learn More About CHD: For further information on congenital heart disease and ongoing research, you can visit resources like the CDC on Heart Conditions or the American Heart Association’s page on CHD. Additionally, this podcast offers valuable insights into related topics.
In closing, I hope this sheds light on the importance of recognizing congenital heart disease. If you want to engage further in this conversation or seek assistance, feel free to reach out for more information.