Congenital Heart Defect/Disease

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My Love for the New CHD Parents

I'm not sure how we got here, but somehow I've blinked and my son is 19. He's a sophomore in college and a premed major who's already a Certified Medical Assistant.

He's also a four-time open heart surgery survivor.

He's got lots of acronyms attached to his Congenital Heart Defect (CHD) history and, as of last year, he's added ventricular tachycardia to the mix. He's had four open heart surgeries, two stents, one melody valve, one ablation, one Link monitor, and countless MRIs and CAT lab visits. He still goes twice a year - and now to two different cardiologists: one general and one for the v-tach.

This path is not for the weak. It stinks. That's it. There's no shiny way to spin it. Being a CHD parent is the most difficult thing I've ever done, and I suspect just about all of us would say the same. There is no cure for the myriad of different CHD combinations any child could be born with. And that's a really tough pill to swallow. It never gets "easier," but unfortunately, you do learn to adapt.

I say all of that to say this to new and younger CHD parents:

Be scared on the days you need to be scared. It's OK and don't let anyone tell you otherwise. Cry if you need to. I did. But, for all the days in between, treat your child like anyone else - and others will follow.

If your child falls, let them fall. Try as hard as you can not to see an imaginary bubble around them. I regret not taking this advice when my son was small.

As they get older, it's really important not to treat them like they are broken. They are not. Their histories are just different. It's up to us to change the perceptions in our own heads about what their childhoods may look like.

None of what I'm saying makes it any easier for you. I've been there and still live there sometimes. You're angry. You're frustrated. You're helpless. Believe me, I know. The memories of every hospital stay, surgery and visit are forever burnt onto my brain.

However, I try to remind myself that my son doesn't know any different of a life. This is his journey - as much as I hate it. He doesn't have a "before CHD," so this is all it's ever been for him.

As your child gets older, when it's appropriate, educate them about their bodies. If they have restrictions, meet them with a positive outlook (as best you can). If they're on meds, do the same. As my son got older, we encouraged him to ask questions and to learn more.

Now, as he's gotten older, he's taking control of his own health (with me still there, of course; I'm not leaving).

Despite all of it, he swears he wouldn't change anything because it's made him who he is and opened doors to his future he would not have had. As his mom, I, of course, still disagree.

I am still a VERY emotional mama, but I have reconciled in my mind that as much as I'd take it away in a minute if I could, I can't. It's easy for me to say this right now (especially since he's stable and healthy), but I know the emotion and anger and all of it is hard. I still hold my breath at every appointment. I still smell the smells and see memories at every turn. It never goes away.

This path is not easy. It sucks. We'd all take it away if we could. But CHD parents, just know that you're doing great. Give yourself some grace. Take it one day at a time. There's no roadmap for this. Every single child's journey is different.

You will overwhelm yourself if you project a decade down the road. Enjoy the quiet moments. Enjoy the calm as best you can. Remember that for all the tough days, there are also so many good ones.

Lean on other CHD parents or family that will let you be in your feelings and not tell you how to feel about a situation they can't even fathom.

I am wishing all of you the very best. I will say that in the close to 20 years we've walked this walk, we've seen many medical advances. I still keep hope that one day there will be a cure. Until then, I will keep walking beside my son and supporting him as best I can.

#CHD #1in100 #thereisnocure

Post

My Love for the New CHD Parents

I'm not sure how we got here, but somehow I've blinked and my son is 19. He's a sophomore in college and a premed major who's already a Certified Medical Assistant.

He's also a four-time open heart surgery survivor.

He's got lots of acronyms attached to his Congenital Heart Defect (CHD) history and, as of last year, he's added ventricular tachycardia to the mix. He's had four open heart surgeries, two stents, one melody valve, one ablation, one Link monitor, and countless MRIs and CAT lab visits. He still goes twice a year - and now to two different cardiologists: one general and one for the v-tach.

This path is not for the weak. It stinks. That's it. There's no shiny way to spin it. Being a CHD parent is the most difficult thing I've ever done, and I suspect just about all of us would say the same. There is no cure for the myriad of different CHD combinations any child could be born with. And that's a really tough pill to swallow. It never gets "easier," but unfortunately, you do learn to adapt.

I say all of that to say this to new and younger CHD parents:

Be scared on the days you need to be scared. It's OK and don't let anyone tell you otherwise. Cry if you need to. I did. But, for all the days in between, treat your child like anyone else - and others will follow.

If your child falls, let them fall. Try as hard as you can not to see an imaginary bubble around them. I regret not taking this advice when my son was small.

As they get older, it's really important not to treat them like they are broken. They are not. Their histories are just different. It's up to us to change the perceptions in our own heads about what their childhoods may look like.

None of what I'm saying makes it any easier for you. I've been there and still live there sometimes. You're angry. You're frustrated. You're helpless. Believe me, I know. The memories of every hospital stay, surgery and visit are forever burnt onto my brain.

However, I try to remind myself that my son doesn't know any different of a life. This is his journey - as much as I hate it. He doesn't have a "before CHD," so this is all it's ever been for him.

As your child gets older, when it's appropriate, educate them about their bodies. If they have restrictions, meet them with a positive outlook (as best you can). If they're on meds, do the same. As my son got older, we encouraged him to ask questions and to learn more.

Now, as he's gotten older, he's taking control of his own health (with me still there, of course; I'm not leaving).

Despite all of it, he swears he wouldn't change anything because it's made him who he is and opened doors to his future he would not have had. As his mom, I, of course, still disagree.

I am still a VERY emotional mama, but I have reconciled in my mind that as much as I'd take it away in a minute if I could, I can't. It's easy for me to say this right now (especially since he's stable and healthy), but I know the emotion and anger and all of it is hard. I still hold my breath at every appointment. I still smell the smells and see memories at every turn. It never goes away.

This path is not easy. It sucks. We'd all take it away if we could. But CHD parents, just know that you're doing great. Give yourself some grace. Take it one day at a time. There's no roadmap for this. Every single child's journey is different.

You will overwhelm yourself if you project a decade down the road. Enjoy the quiet moments. Enjoy the calm as best you can. Remember that for all the tough days, there are also so many good ones.

Lean on other CHD parents or family that will let you be in your feelings and not tell you how to feel about a situation they can't even fathom.

I am wishing all of you the very best. I will say that in the close to 20 years we've walked this walk, we've seen many medical advances. I still keep hope that one day there will be a cure. Until then, I will keep walking beside my son and supporting him as best I can.

#CHD #1in100 #thereisnocure

Post

Athletic Awakening: Thriving Through Recovery After Open Heart Surgery

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.

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21 tips for less stressful, more effective cardiology visits

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

21 tips for less stressful, more effective cardiology visits

Advocate for yourself, manage your emotions and get the information you need
3 reactions
Post

21 tips for less stressful, more effective cardiology visits

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

21 tips for less stressful, more effective cardiology visits

Advocate for yourself, manage your emotions and get the information you need
3 reactions
Post

21 tips for less stressful, more effective cardiology visits

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

21 tips for less stressful, more effective cardiology visits

Advocate for yourself, manage your emotions and get the information you need
3 reactions
Post

Broken Hearted in Nevada: Julie's Story

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

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A pacemaker and a baby in the same year

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

A pacemaker and a baby in the same year

It wasn’t Allison Holden’s plan, but “everything just lined up perfectly.”
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What do you call a dear with no eyes?

No-Idea (No eye dear)! 😜 My 7 year old son, Joshua, told me that joke! It amazes me that he was born with a congenital heart disease and as per doctors, he might not live or have a normal life.  However, what is normal?
This joke I passed on to you! So his normal is to positively impact others lives daily. His boldness and extrovert spirit inspired me to live in my authenticity as well.
For the last 10 years, I could count on one hand how many people knew the under the radar triple life I have been living. As a physician, a patient with chronic auto-immune disease such as MS and as a parent with of a child with chronic disease.
Recently, I decided to tell my story with launching my new book, “The Parts We Don’t Talk About!” This is when you stop reading…lol..roll eye and say “not another motivational story about someone living their best life”. Instead, I decided to write a book about how the world viewed my “successes”, not knowing I face several failures and physical challenges daily. The book addresses biases during medical training from colleagues, racial inequality while seeking professional growth, pregnancy and the treatment of doctors living with chronic disease, such as Multiple Sclerosis. Not boring at all.

I am outing myself as a patient with MS, who is also a doctor, to inspire others to persevere in the midst of their difficult moments. That he/she/they may understand that in life there are no mistakes, only adjustments.
We need to finish this conversation! After all, I am shocked you got this far in the email. Please schedule a free one-to-one call with me via my website. www.drsimarta.com. This is the first step to creating change and more funny Joshua jokes!

Simarta Brennan-Prescod. MD/MPH
Mom, Wife, thriver, Entrepreneur, Speaker, Author

Website: www.drsimarta.com
Instagram @drsimarta
Facebook Drsimarta
LinkedIn: Drsimarta
Phone contact (727) 217-5153
Book: ISBN: 979-8-218-19016-3

Dr. Simarta Inc. | Author

As a speaker, author & physician, my mission is spread awareness of advocating in the healthcare system for yourself as a patient and loved ones to patient. Dr. Simarta.