Raising Awareness for Congenital Heart Disease: A Mother’s Heartfelt Journey

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This piece is dedicated to raising awareness about Congenital Heart Disease (CHD) during this important week of recognition.

A year ago, my understanding of congenital heart disease was limited. I could share vague facts about birth defects and mention someone I knew whose child had undergone open-heart surgery at three years old to mend a heart defect. I would have described that child as a picture of health, happily running and playing. However, my understanding of the true prevalence and severity of CHD was sorely lacking.

If you had asked me while I was six months pregnant, hearing the term “heart condition” during an ultrasound would have sent me into a spiral of anxiety. I wouldn’t have grasped that the little life I was carrying could have a serious, life-threatening condition. In fact, I would have likely tried to distance myself from any conversations surrounding such topics.

Fast forward to nine months ago—I welcomed a beautiful baby boy into the world, a boy who arrived with a purple hue and oxygen levels in the 60s. After several misdiagnoses and a frantic ambulance ride, he underwent open-heart surgery just 16 hours after birth. We were repeatedly told to cherish what could be our final moments together, capturing each second as a lasting memory. For nearly seven months, we embraced a whirlwind of joy and challenges, as Charlie proved to everyone just how resilient he was. Sadly, on October 27, the battle against congenital heart disease became too much, and Charlie ascended to heaven.

There are crucial truths regarding CHD that need to be highlighted—truths that often go overlooked and are in dire need of greater awareness and funding. Here are ten insights about congenital heart disease from the perspective of a mother who experienced an unimaginable loss:

1. CHD can affect anyone. Regardless of race, age, or socioeconomic background, congenital heart disease knows no bounds. It can emerge in pregnancies where the mother has done everything right. I never imagined I would have a child with such a critical illness.
2. It’s more prevalent than you think. CHD affects 1 in 100 births, making it as common as autism. Many people are unaware of this startling reality.
3. Our kids are not defective. A comment I received while Charlie was alive still haunts me: “Charlie is just a kid with a heart defect, so he will be sick and may die.” Such words are cruel and dehumanizing. Just because a child has anatomical differences does not diminish their worth or the love they deserve. Their lives are just as valuable as those of children born without health challenges.
4. There are various types of CHD. Heart conditions come in many forms and severities, and some children are classified as having “complex” congenital heart defects.
5. Heart defects are more common than childhood cancer. The prevalence of heart defects in children is a significant and alarming statistic that deserves attention.
6. There is no cure. Most congenital heart defects require surgical intervention, but surgery does not equate to a complete fix. Children must have lifelong follow-ups with cardiologists, living with the constant worry that complications could arise at any moment.
7. CHD affects more than just the heart. Many children suffer from complications affecting other organs such as the lungs, kidneys, and brain. Charlie’s battle with pulmonary hypertension and chronic lung disease ultimately led to his passing, highlighting how interconnected these issues can be.
8. Funding is lacking. Despite the dedication of many healthcare professionals in this field, congenital heart disease is still severely underfunded relative to its prevalence.
9. You can make a difference. Consider donating to a nearby congenital heart center or organizations like The Children’s Heart Foundation. My Charlie received excellent care at a local hospital, and we continue to support them. Not in a position to donate? Help raise awareness by sharing this article and educating others.
10. Learn more about CHD and ongoing research. Resources like the CDC on Heart Conditions, the American Heart Association on Congenital Heart Disease, and the C.S. Mott Children’s Hospital’s Congenital Heart Center can provide valuable information.

In summary, congenital heart disease is a serious issue that affects countless families. It’s time we shine a light on this condition, advocate for better funding, and foster a community of support.

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