This post is dedicated to raising awareness about Congenital Heart Disease (CHD) during CHD Awareness Week.
A year ago, my knowledge of congenital heart disease was minimal at best. I could only share a couple of vague details, including knowing someone whose child underwent open-heart surgery at three years old to mend a hole in his heart. I would have described that child as vibrant and healthy, running around with abandon. Yet, my understanding was largely superficial, failing to grasp the widespread nature, severity, and complexities surrounding CHD.
If you had asked me while I was six months pregnant how I would react to hearing the term “heart condition” during an ultrasound, I would have expressed sheer terror. The thought that my unborn child could face a life-threatening condition was unfathomable. I would have wanted to run far away from such discussions.
Fast forward nine months, and I welcomed a beautiful baby boy, who, at birth, displayed concerning symptoms—he was purplish and had oxygen saturations in the 60s. After a series of misdiagnoses, an ambulance ride, and a life flight, my son underwent open-heart surgery just 16 hours after he was born. During that time, we were repeatedly told to cherish our moments with him, as we might not have many left. We were fortunate to share nearly seven months of precious memories with Charlie—a time filled with joy, challenges, and his remarkable resilience. Sadly, on October 27, he succumbed to the relentless challenges posed by CHD.
There are critical points to highlight about congenital heart disease, which often does not receive the awareness, funding, or research it desperately needs. Here are ten essential facts about CHD, shared from a mother’s perspective:
- Universal Impact: Congenital heart disease can affect anyone, regardless of race, age, or socioeconomic status. It can occur in pregnancies where the mother follows all medical recommendations. I never imagined I would have a child with a critical condition.
- Prevalence: Congenital heart disease is more common than many realize, occurring in approximately 1 in 100 births—comparable to autism rates.
- Value of Lives: Just because a child is born with anatomical differences doesn’t mean they are defective. Every child, regardless of their condition, deserves love and value. Their lives are not diminished by their challenges.
- Diversity of Conditions: There are numerous types and subtypes of congenital heart defects, with varying degrees of severity. Some children are classified as having “complex” heart conditions.
- Comparison with Cancer: Heart defects are more common in children than childhood cancer, yet often receive less attention.
- Lack of a Cure: Most congenital heart defects require surgical intervention, with the timing depending on the specific condition. Surgery does not “cure” the condition; affected children must see a cardiologist throughout their lives, living with the constant fear of potential complications.
- Wider Impacts: Congenital heart disease often affects more than just the heart. Many children face complications involving their lungs, kidneys, liver, and brains, leading to long-term health challenges. Charlie’s struggle with pulmonary hypertension ultimately contributed to his passing.
- Funding Gaps: Despite the work of dedicated professionals, funding for research and awareness of congenital heart disease remains inadequate compared to its prevalence.
- Ways to Help: Support local congenital heart centers, like the one where Charlie received care. Donations can also be made to organizations dedicated to CHD research. If financial contributions aren’t possible, raising awareness by sharing this article can make a difference.
- Further Resources: For more information about congenital heart disease and ongoing research, consider visiting reputable sources like the CDC on Heart Conditions, the American Heart Association on Congenital Heart Disease, and the Congenital Heart Center at C.S. Mott Children’s Hospital.
In summary, raising awareness about congenital heart disease is crucial. By informing ourselves and others, we can contribute to the fight against this often-overlooked condition. For more information on pregnancy and related topics, you can explore resources like Kindbody and learn about home insemination at Make A Mom. For privacy details, you can also review our privacy policy.