r/chd

Yesterday at 22 weeks pregnant I found out my daughter most likely has HLHS. It’s considered borderline at the moment, but the cardiologist felt like more likely than not it would progress. I am devastated. She likely also has Down syndrome per NIPT. We did not do invasive testing, but I think this heart issue seals the deal. 

The cardiologist talked through the standard surgical path with us and the slightly less severe surgical path in the unlikely event it doesn’t progress to severe HLHS. Perhaps I’m just inventing reasons to find hope, but it was not lost on me that he made no mentions of termination or palliative care in his counseling to us. 

I am scared. I am angry at now twice losing the childhood we had imagined for her. And I’m feeling hopeless that there’s no way this ends well. The cardiologist talked about how high the quality of life tends to be and mentioned the course of surgeries having a high success rate which was only slightly lowered by T21. We are located close to what seems to be one of the leading hospitals in this field and are prepared to take whatever surgical and therapeutic courses that would be necessary to save her. 

Any positive or success stories would be very welcomed as I now fear the potential of having a very severely disabled child if we even get to bring her home at all. I know not every case is successful, but, respectfully, please don’t chime in with those. I just really need some positivity right now. 

Btw I was hardcore bullied by my fourth grade teacher. She was extremely religious and didn't believe me because "I seemed fine".

Hey everyone! I'm u/StayWeird0505, a founding moderator of r/CHDpeople.

This is our new home for all things related to CHD conditions all around the world. We're excited to have you join us!

What to Post
Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, photos, or questions about CHD like your life, your work, your school, all your experience, ever your trauma due to this contidion 😃
Community Vibe
We're all about being friendly, constructive, and inclusive. Let's build a space where everyone feels comfortable sharing and connecting.

How to Get Started

1. Introduce yourself in the comments below.
2. Post something today! Even a simple question can spark a great conversation.
3. If you know someone who would love this community, invite them to join.
4. Interested in helping out? We're always looking for new moderators, so feel free to reach out to me to apply.

Thanks for being part of the very first wave. Together, let's make r/CHDpeople amazing.

#CHD #Cardio

Hello everyone! I’m from Brazil, from a region with good access to medical and scientific resources. I’m a first-time father of a little boy who was born with transposition of the great arteries (TGA) associated with interrupted aortic arch type B.

We discovered the severity of his heart condition during the fetal echocardiogram, and that was probably the most desperate moment of my life.

Our son had his first surgery at 6 days old: the arterial switch operation (Jatene procedure) along with reconstruction of the aortic arch. He spent 10 days in the ICU and another 4 days in the hospital ward. When we finally came home, his echocardiogram looked excellent and everything suggested the surgery had been a success.

However, at 6 months old, we repeated the echo and found a gradient of 90 mmHg. He had developed a significant neopulmonary stenosis and we had to go through another surgery. The procedure was complex because of an intramural coronary artery, and during the postoperative period he also developed necrotizing enterocolitis.

Those months were extremely difficult — constant fear, helplessness, and uncertainty.

Today he is 2 years old. His echocardiograms are currently stable. At the moment he has a maximum gradient of 24 mmHg in the neopulmonary artery, mild to moderate neo-pulmonary valve regurgitation, no signs of aortic arch obstruction, intact septa, and preserved cardiac function. The right ventricle shows only mild hypertrophy, with normal systolic function.

I really want to believe he has good long-term chances, but I still feel very afraid about the future. I would like to know if anyone here knows similar cases — children or adults who went through something like this. Did they need further interventions later in life? Are there adults who survived and are living well after a similar condition?

Hey there, my daughter has gotten released from the hospital on Monday at 8 months old. She was diagnosed with HLHS and has gotten both her Norwood at 3 days old and Glenn at 4 months old. She has a GJ tube. Can someone with a similar experience please given me an idea of what her next couple of years will look like and also maybe what her adult life would look like? I understand she will always have doctor’s appointments and heart and blood pressure medication and I know that everyone’s story is different. But right now, it takes both of us to give her a bath because she wants to pull at her tubes. And I’m feeling like it will be a struggle for a while. Thank you for anything to add to all of this.

My partners first born was born completely healthy, however our daughter has TOF. We would love another child one day but we’ve always been told once you have one with a CHD the chances are increased significantly! I would just like to know if anyone’s ever had a heart baby and then had a heart healthy one? We are quite young, 23&25 and our daughters surgery was the biggest thing either of us have ever been through and wouldn’t change it or her for the world, but knowing her surgery was planned for 7 months then 4 days after that appointment she had her surgery at 8 weeks 6 days and she is yet to have another surgery one day in the future scares us incase our second may also end up with a CHD. We had lots of tests done during my pregnancy (our daughter is almost a year) and they came to the conclusion it was something that “just happened” rather than any cause or genetics. That being said, it’s extremely terrifying, the fear I felt when she had her chest re opened and was told “she needs to make it through the next 24 hours” I don’t think I could ever do again.

My 7 year old daughter was recently diagnosed with a large atrial septal defect that needs to be closed by catheterization or OHS. This was not identified prior, which I understand is pretty common, as is ASD in general, in the context of CHD. Upon initial assessment, her cardiologist seems pretty confident it can be repaired by catheter closure. We are waiting to hear definitively, hopefully by the end of the week.

I guess I’m just looking for reassurance or anecdotal experience in school-aged children of ASD closure and what the short and long term recovery looked like.

My baby just had a Ross-Konno procedure. Is there anyone out there who can tell me how their baby’s heart responded to the surgery? We are still recovering in the ICU and should be getting our first echo sometime in the near future. His levels are stable but I am very nervous for the echo

My 15 month old just had a 10 hour OHS where they did the Rastelli procedure with DKS, along with other smaller procedures. She blew recovery out of the water but we expected to still stay awhile while she recovered so her incision could heal. They discharged us after only 4 days and said she’s good to go and now I can’t keep her from being a toddler again!! She’s acting like she hasn’t just been through a major surgery 🙃. I don’t know if this a question or a rant but is this normal????? How do I keep her from being a toddler?!

My son is 10 days old today. He had open heart surgery for coarctation of the aorta at just 2 days old. Scariest thing I’ve been through! Surgery went well, thank God! He is being discharged tomorrow… it seems so soon. But I’m excited to get him home and be with all my kiddos. His left vocal cord is paralyzed from the surgery… so they had to do a swallow study and it showed he was aspirating on breast milk and regular formula. 😣 So they thickened his formula and he’s doing really well with that! The last 5 feeds he hasn’t needed to use his NG tube. Before we leave tomorrow afternoon, I’m taking a class on changing the tube. And I’m freaking out because I’m scared to touch it! I know that sounds ridiculous but it’s intimidating to me… not sure why, it just is! I wish they would take it out… but they’re keeping it in just in case he doesn’t drink all of his formula. I’m worried about him becoming dependent on it… I’ve read that small babies can become dependent on it pretty easily and I definitely don’t want that. Does anyone have any advice on this?

Hey all,

Im a male in mid 20s, born with HLHS. I was always insecure about my body because I was never able to gain weight. I feel underweight and skinny.

My weight never crossed 125lbs. I try to eat but get full very quick. Ive been working out for a year and just barely started getting some muscle mass on my biceps.

Anyone with CHD feels the same and how can I make my muscle mass increase?

my little sister (11) has a heart condition that makes it so only one half of her heart pumps blood in and out (hyperplastic left heart syndrome) , which means she's on meds to make it beat slower and thin her blood, amongst other things, those are to increase her quality of life, and make sure her heart is good

she was ment to get a heart transplant at some point, as with her heart condition it's unlikely/impossible for her to live to be an adult, as the strain on her heart would be far far too much

currently and forever, her heart is too weak for a transplant, meaning she won't live past being a teenager (15-16 bets best case), so she will only get worse as the years goes on, and eventually her heart won't be ale to keep up

so how do I cope with the fact my little sister will die?

I know this is heavy, but I just really need advice, I don't know how to progress with this

I’m 24M with DILV accompanied with First Degree block and left pulmonary artesia or whatever the fuck it’s called. Because let’s not forget for every main CHD it has to include a couple of…. others. I’m sick of this shit. I feel like a 80 year old man. I know I’m gonna die before 50 possibly before even 40. I just fucking know it. The surgeon lied to my mom saying I’ll have an average life expectancy post-fontan. Clearly he was just trying to comfort her. I get tired easier, I breathe slower, I have chest pains every now and then. I know itll be over in a matter of time. And If not my heart, then my liver, and if not my liver then my lungs. This disease will fuck you up and I’m tired of it. Just saw the cardiologist a few days ago he put back on lisonpril after 3 years of having no meds. Those 3 years are probably the most normal I’ve ever felt in my life. Most of my life I’ve been ignorant to my condition just actively ignoring it, convincing myself, that I am normal, because that’s just what I want to BE. It’s all I want to BE. But the older I get, the harder that seems. Complications will occur and have been, there’s just no way around it and one day this fontan will fail.

I fucking hate this disease with a burning passion. The thought of My lifespan is in the back of my head everyday no matter what I do and I have nobody to relate too. It doesn’t allow me to live a fully functioning life even when I’m just out driving or just doing everyday mundane things. I will admit I am little overweight at 5’9 (185 pounds) but still there’s people my age way out in Mississippi for example, who are like 300 fucking pounds obese and still have better oxygen levels than me. I didn’t do anything to get this disease yet obese people do everything to get theirs by eating like pigs.

Not looking sick is a blessing but a curse at the same time because nobody genuinely believes you when you have problem especially my fucking stupid ass low IQ dad. Who doesn’t know shit about my life because he was never involved growing up even refusing to believe I have this and seeing my medical records. My mom is just as complacent of being a shitty parent and should’ve just aborted me as she had no money to raise a kid especially a sick one. These 2 weren’t even together. And I’ll most likely die before I’m 30. Lonely, with no gf, right now sitting unemployed with no job, no money, never traveled, no accomplishments, nothing.

I wanted to join the marines back in 2020 (LMAO) (yeah right) that was completely out the window. Every job I’ve had since 2020 has been short due to burn out and fatigue. Fuck my life, and if you’re a parent who just got the news of an ultrasound that your baby is gonna have CHD (that’s why you’re lurking on this sub) you better be a good one. And listen to them and understand. But either way, (at least in my opinion) nonetheless even if my parents were great, I still think it’s very selfish to bring a sick child to this world knowing its going to have problems and complications over time. A lot of weirdos who are influencers do it for TikTok or other socials for clout and that’s not talked about enough and it makes me sick to my stomach. Some of these parents I know very well do it for religious reasons like “oh I can’t abort my baby” lol. God isn’t real, because if he was, there wouldn’t be a single disease in this planet to begin with. (That’s also an opinion as well you can take it however you want I’m not going to argue with you). I personally believe in science and the things that are actively trying to make our conditions have long fulfilling lives.

And this is my raw, unfiltered rant as a 24M with this condition that will hopefully shed some light on the realities and truths of the depression of having CHD specifically the ones who are Post-Fontan, and what we deal with on a daily basis. I can’t speak for other CHD’s but they’re all fucking bad and it makes me sick to my stomach that there’s babies born with this and much worse. Nobody deserves this. I guess it is what it is. Peace.

BTW, please don’t comment “The truth is life isn’t guaranteed for anyone even non-chd, you can die in a car crash tommorow”. Or some shit like that…No fucking shit.

Just wondering how it worked out? I have HLHS and was thinking about this.

Any restrictions in your daily life or risks in having children?

I am 22 weeks pregnant with Twins. Found out last week that Twin A has multiple heart conditions (Double outlet right ventricle [DORV], Ventricular septal defect [VSD] and Transposition of the great arteries [TGA]). As he also is measuring short on his femur and humerus bones they think he will have a genetic condition such as downs syndrome (but we have decided not to have an amniocentesis so won't know until he is born).

We know he will need at least one operation at a few months old, possible one sooner which we won't know until later on/once he is born. Just wanted to know if anyone else has been through similar? If so, how did you cope with the anxiety and uncertainty?

My doctor heard a heart murmur on my baby that did not go away after a week so referred her to a Pediatric cardiologist. At 3.5 weeks old she saw the cardiologist and had an echo which revealed that she had five small VSDs. He said that four of them are very tiny and one is small and they all measure under 1mm. He said they have a 95% chance of closing on their own and we don’t see him again until she is 1 year old.
I want to be hopeful that she will continue to be well and asymptomatic and that these VSDs will not affect her in her lifetime but I can’t help but worry. I felt so in shock hearing she has five VSDs.
Has anyone else’s baby been diagnosed with multiple VSDs? What was the outcome?

Looking for anyone who has been with the team at PCH for echos, open heart surgery and everything in between. Moving there soon and would like to know what to expect

I have a 3.5 year old with HLHS, and she is having her Fontan surgery at the end of the month.

We are flying across the country for the surgery - same hospital she had her first two surgeries and she has follow ups there. Our families live in that city, so it's always fun for her to see her cousins, aunts and uncles.

She knows we are going on a trip, and I've lightly mentioned it once (doctors are going to fix her heart so she can run faster). But I really don't know where to start to talk to her about this. She's a smart kid, she remembers everything that everyone says (we have to watch what we say, in that phase!) She'll put things together.

I just don't know when and what to say, how much to say. I want her to feel brave and confident.

Help!