Congenital Heart Defect/Disease

My youth was shaped by the rhythm of surgeries and medical interventions because of a congenital heart defect known as Tetralogy of Fallot with an absent Pulmonary Valve. With four heart surgeries under my belt in my 24 years of life I have become very familiar with the process of recovery and instead of succumbing to the physical constraints, I found solace and passion in an unexpected realm—gymnastics. Throughout my time of rebelling against my physical constraints, I’ve learned some invaluable tips from my success as an continuing athlete that I’d like to pass to others who are facing difficulty grappling with their own physical limitations:

1. Mindset is Everything: Emphasize the power of a positive mindset. The body may face limitations, but the mind is a limitless source of strength. By cultivating a resilient and optimistic mindset, one can navigate the toughest terrains.

2. Adapt and Conquer: My journey in gymnastics taught me the art of adaptation. Instead of dwelling on what my body couldn’t do, I did my best to focus on what it could. By molding physical feats to suit your capabilities, you can transform your limitations into strengths.

3. Listen to Your Body: Being attuned to the subtle signals your body provides is vital for progression. Although it’s fun to surpass limits occasionally, stopping and listening to your body is not a sign of weakness; it’s a strategy for sustainable growth. Knowing when to push and when to rest is crucial in your journey to recovery.

4. Celebrate Small Victories: Recovery is a series of victories, whether it’s taking one extra step or achieving a personal record. I encourage you to celebrate all victories; each step forward, no matter how small, is a triumph.

5. Find or Build a Community : Over the years I’ve found strength in the support of my community. Whether it was family, friends, or fellow athletes, having a support system played a pivotal role in my recovery and my continuation of the sport. Surrounding yourself with positivity and encouragement is a catalyst for progress and can give you an additional purpose to remain active.

On August 31st, 2023 I had my fourth heart surgery, the procedure aimed to replace my pulmonary valve once again and address my enlarged pulmonary arteries had become three times their normal size, leading me into another phase of recover. Although I have retired from gymnastics, I have set my sights on completing the 2024 Spartan Race Trifecta to raise funds for the Adaptive Training Foundation, an organization dedicated to empowering individuals with physical disabilities. My decision to participate is not just a personal milestone; it’s a declaration to the world that resilience knows no bounds and to encourage you to keep moving forward.

Hi, my name is Carminesinging706. I've been diagnosed with lupus and congenital heart defect and I get lonely and have anxiety about my health.

#MightyTogether #Lupus

Ask questions, take notes, bring a friend: This is all good advice for navigating doctor’s appointments. But there is so much more you can do to make these visits more effective and less stressful, particularly if you’re someone with ongoing medical issues. I put together a guide for heart patients to get the most out of their cardiology visits. 21 tips for less stressful, more effective cardiology visits #HeartDisease #CongenitalHeartDisease #CongenitalHeartDefect #Anxiety

Ask questions, take notes, bring a friend: This is all good advice for navigating doctor’s appointments. But there is so much more you can do to make these visits more effective and less stressful, particularly if you’re someone with ongoing medical issues. I put together a guide for heart patients to get the most out of their cardiology visits. 21 tips for less stressful, more effective cardiology visits #HeartDisease #CongenitalHeartDisease #CongenitalHeartDefect #Anxiety

Ask questions, take notes, bring a friend: This is all good advice for navigating doctor’s appointments. But there is so much more you can do to make these visits more effective and less stressful, particularly if you’re someone with ongoing medical issues. I put together a guide for heart patients to get the most out of their cardiology visits. 21 tips for less stressful, more effective cardiology visits #HeartDisease #CongenitalHeartDisease #CongenitalHeartDefect #Anxiety

Part 1 of 2 Congenital heart defects are the most common birth defect in humans, affecting 1% of the world’s population. In the United States alone, 40,000 babies are born with CHD every year.1. Of those babies, about 25% will have a critical CHD, requiring surgery in the first year of life. There is no cure.

In the last few decades, advances in surgical techniques and research mean that today, about 95% of those born with non-critical CHD and 69% of those born with critical CHD will live to see adulthood. Those medical advances were largely in the pediatric space and focused heavily on survival.

In recent years, estimates show that over 1.4 million adults are living with CHD in our country. But for this population, the U.S. medical system is woefully underprepared to treat them. You may have seen stories from actors, politicians, or athletes living with CHD who seem to have no issues receiving appropriate care, but what about everyone else?

Meet Julie, a 53-year-old woman living with critical congenital heart defects. She is a daughter, twin sister, and loving mother. Julie has miraculously outlived every grim prediction doctors made in her early childhood, despite the odds being overwhelmingly stacked against her.

For babies like Julie, born with congenital heart defects between 1970-1974, the biggest hurdle was surviving the first year of life. If they did reach their first birthday, the chances of surviving to adulthood were just 77-83%.

Heart surgery on infants did not become commonplace in the United States until the early 1970s. After a year of infant CHD surgery at Boston Children’s Hospital in 1972, surgeons had some data to work with. They realized that babies with critical CHD who died generally did so in the first few weeks of life. The rest of that decade saw a shift from surgery in infancy to surgery in the newborn period for these babies, with the first successful procedure coming in 1983 on an 11-day-old.

Julie had her first open-heart surgery at the age of 5 1/2 in 1976. Her childhood was filled with summer vacations, school, birthdays, and lots of visits to the pediatric cardiologist. Because there were no specialists for adults with congenital heart defects until 2015, Julie continued to see her pediatric cardiologist as an adult. Her heart remained stable until her mid-20s.

In 1995, at age 25, Julie gave birth to a beautiful, healthy baby girl. Researchers had barely begun to study adults with CHD and no one told Julie she should have additional cardiac care and monitoring during pregnancy (probably because they didn’t know yet). Standards of care for adults with CHD were not issued until 2008 with the next update coming in 2018.

After the birth of her daughter, Julie’s heart really struggled. By age 26, in 1996, she was back in the hospital for her second open-heart surgery. There was no road map for Julie’s medical team to follow and they were dealing with a long list of heart-related issues in her body. Not to mention, Julie lived in Nevada, where the healthcare system could barely serve its healthy population.

The surgery did not go as planned and took far longer than anticipated. As the procedure entered its seventh hour, extensive bleeding and the length of time on the bypass machine forced the surgeons to place Julie into a coma, with an open chest. She wouldn’t wake up for almost two weeks.

What happened during her 13-day coma is largely unknown. Medical records were not easy to access, and communication from doctors to family members was limited. Julie woke from the coma completely paralyzed on her right side, unable to hold, feed, or care for her young daughter. She didn’t know it at the time, but this would be a turning point for her health.

Facing yet another uphill battle in her young life, Julie persevered and recovered function on her right side with months of intensive therapies. She would go on living life, raising her daughter, and continuing to follow up with her pediatric cardiologist.

As she aged, additional health conditions arose and everyday tasks became more difficult. Julie could feel that something was happening in her body, but unfortunately, Nevada still did not have any adult CHD specialists that could investigate. Despite the herculean efforts of her pediatric cardiologists, Julie declined into heart failure and would require a full evaluation by a specialized adult CHD center.

The team at UCLA’s Adult Congenital Heart Disease Center confirmed Julie’s heart failure diagnosis, but she was blindsided by the severity of her disease. Without knowing they even existed, Julie never had the chance to use the ACHD care standards for her anatomy, and was now looking at evaluation for a heart transplant.

If Julie’s life were a feature film, it

For the latest edition of my newsletter, The Heart Dialogues, I spoke with Allison Holden, a Memphis-area real estate agent born with Transposition of the great arteries. We talked about her having a daughter, coping with health anxiety and why she’s starting to get more comfortable planning for the future. Read this one, and sign up to get future editions in your inbox! A pacemaker and a baby in the same year

#CongenitalHeartDefectDisease

Hi! I wrote about growing up with tricuspid atresia and how that's affected my adult life in an essay for The Wall Street Journal. Sharing here in case anyone's interested! Thanks. Essay | My Heart Defect Was Repaired by Age 4. But Was I Cured?

#CongenitalHeartDefectDisease