Congenital Heart Defect/Disease

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

So apparently they did a wipe and my previous posts are gone. That’s fun

Anyways, just a little rant - not having the best time here at the moment.

Need a heart valve transplant this year from my congenital defect, and dealing with doctors again is not something I enjoy. My mom is freaking out, my sister is being clingy, and my dad is demanding I try to schedule mutiple fact finding and question based meetings with the doctors. I’ve looked at some of his questions… they go into excessive detail. Painfully graphic detail. The kind of detail that forces me to remember the info dump I was given at 5 years old about how and exactly why I’ll never be able to match anyone else.

I just want this to be over. I don’t much care if it’s a success or not any more, I just want to go back to ignoring the fact I’ve never been healthy and just deal with the side effects I’ve gotten so good at suppressing. Or not… won’t have to deal with side effects at all that way. I’d like to stick around if I can, but right now I dont much care… I just want this done. #Depression #CongenitalHeartDefectDisease

Hi everyone,

I'm probably not your typical new member, as my son is now 23 years old, and doing well. I am not.

When he was born, he was diagnosed with a congenital heart defect, followed by hundreds of febrile seizures daily, C.P., and reactive airway disease. The breathing issues were the most life threatening. He (and I) spent 28 months briefly out but mostly in-patient, at CHKD hospital. The next 4 years saw us gradually home more than in-patient.

Immediately, it became evident to me that the doctors DO NOT know everything. There were so many mistakes made by his health team...

At 5 days of age, I was told by his neurologist ( who I later became very close to), that my child would "never walk, talk, say "mama", and would be in a vegetative state always, if he were to survive"

My son was given his last rites four times before he was 5 months old. I was told repeatedly that he would not survive overnight.

Only other parents that have gone through similiar can understand the devastation of this journey.

I am a veteran early childhood special education teacher. I have worked with profoundly disabled children. Until my son was born, I sometimes wondered why parents would choose to keep their extremely disabled child alive via medical intervention. After his birth, all I prayed for was that he just breathe. I get it now.

I was extremely lucky. My son surpassed all negative prognosis. He has grown to be physically healthy (although heart issues are still a concern), very intelligent, and is graduating from college, after being awarded an academic scholarship.

I know I won the lottery. He will be leaving home soon, to pursue his career/life.

The thought of him not being here, where I can take care of him is crippling. He is my whole life. I cannot sleep or eat. Although I try not to, my mind will not stop imagining all the horrible things that might happen to him.

Is this normal for a parent that has raised a medically fragile child?

My daughter is 6 years older and was always healthy. I do not have these issues with her being away from my sight.

I actually feel like I need mental health help to adjust to my son leaving the "nest".

Encouragement, insight, any connection to other parents would be greatly appreciated. I do not know how to navigate this site, but will learn.

If I can help anyone else with my educational, and life experiences, I would be honored to do so.

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

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

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