r/chd

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.

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

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 son will have an echo next week with sedation (nasal midaz).
Is it standard to have sedation at 7 months for better pictures? Anyone refuse sedation and just try to get through it or better to do it and get good pictures?

Anyone who has been through this can you walk me through “just how sedated” he will be?

He was on ECMO so I’m not too worried about his reaction to sedation as he did fine and has had IV midaz before…I’m more worried about my triggers to seeing him sedated again… ☹️

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!

Baby diagnosed with Congenital Diaphramatic Hernia last week at 16 weeks. Dr. at Sacred Heart Medical Center Spokane, WA, said we are looking at a general 70% survival rate if he's born there. Seattle Children's Hospital has a 85-90% survival chance quoted on their website. Does it really matter that much, enough to travel to the other side of the state to give birth?

If you have multiple open heart surgeries, what is your heartiversary? Is it marked from your first? Is it your most recent one? Or do you consider all of them your heartiversary?

My baby’s heartiversary is coming up from her first open-heart surgery, and her second open heart surgery is exactly one year and one day later!!

My daughter has a large VSD around 7mmx8mm in size and is struggling with her weight gain. For those of you who have babies with large VSDs, what did weekly weight gain look like for your babies before they had surgery to correct it?
Did your doctor have a weekly or monthly weight gain goal or expectation for your baby?

My daughter gained almost 2.5 pounds in her first month, but each month since then has been a constant fight to get her to barely gain weight. Month 2 she only gained 13oz, month 3 was 15oz, and these past three weeks only 8oz.

My daughter’s weight gain seems to be slowing way down now.
She’s around 15 weeks now and only 11lbs 4oz. We’ve had her on 10mg/ml of furosemide for the past 3 weeks, but it doesn’t really seem to help. We are fortifying her breastmilk with formula during the day and at night she is nursing. She just never seems super hungry and when she does eat, it’s only around 2oz at a time.
She also seems to have mild reflux sometimes and spits up a little bit during the day.
I guess I’m just looking to see what your guy’s experience was with your baby’s weight gain amount leading up to surgery

My wife and I are parents to a 2 year old and we’re struggling for our baby #2 due in August. We have all the information, but what we need right now is to hear from real families who’ve walked this road.

Our story started at week 12 with an elevated NT scan — told 5% chance of something being wrong. We were in that 5%. Genetic panel came back negative for everything — Turner’s, Noonan’s, DiGeorge, Down syndrome. But the anatomy scan flagged the heart.

Our son’s diagnosis: Long-segment aortic arch hypoplasia with moderate isthmus hypoplasia (z-score -3.96), concerning for coarctation of the aorta, with secondary borderline left ventricular hypoplasia. The narrowing spans the ascending aorta, transverse arch, and isthmus — not a single spot. The LV is smaller than the right as a downstream effect.

It has progressed since our first echo. What was “watch carefully” is now “surgical planning is the priority.”

The plan: Delivering at MGH/Boston Children’s. Prostaglandin at birth, postnatal echo, NICU, and likely a comprehensive arch reconstruction. The open question is whether the LV is adequate for a two-ventricle repair — that determines everything.

Why we’re here: Since week 12 we have been on the wrong side of the odds every single time. It has made statistics very hard to trust. We know we’re at one of the best hospitals in the world. We know the outcomes are generally good. But knowing that and feeling okay are two different things.

We’d love to hear from:

• Parents who received a similar prenatal diagnosis, especially long-segment arch hypoplasia or CoA with borderline LV

• Adult survivors who had arch repair as newborns

• Anyone who simply wants to say “we’ve been there”

- any long term effects of surgery at such a young age

We’re not looking for false reassurance — just real stories. Thank you for being a community that understands what this actually feels like.

Anyone had any tattoos with a mended VSD or similar? I had the op about 26 years ago and it’s fully healed. NHS always advises people with congenital heart disease to avoid them but I can’t see why my risk is much higher…? I’m aware of how bad endocarditis is but my understanding is that the risk is tiny, like way below 1%. Is that true? Keen to hear peoples experiences

Hey everyone! Partner and I recently received some news that baby has some heart defects. It was quite a pessimistic conversation yet I am seeing a lot of positive outcomes in this group.

I will share our 28wk report & would love to hear of some similar stories to hold hope

Fetal Echocardiogram today allowed good views of fetal heart.

Hypoplastic aortic arch with small left sided heart structures.

Single left SVC draining to a severely dilated coronary sinus.

Normal RV size and systolic function.

Mild-moderately small apex forming left ventricle with good systolic function.

Intact ventricular septum.

Normal tricuspid valve. No tricuspid regurgitation.

Mild - moderately hypoplastic mitral valve (5.4 mm, z = -3.01).

Unobstructed RVOT. Normal pulmonary valve and branch pulmonary arteries

Mildly small but adequate aortic valve (3.2 mm, z=-2.21) with normal flow velocity (94 cm/s).

Moderate - severely hypoplastic left aortic arch with antegrade flow.

Normal IVC. Normal pulmonary venous drainage.

Unrestrictive ductus arteriosus with antegrade flow.

They’re stating hypoplastic aortic arch with mild-moderately small left sided cardiac

structures (borderline left heart)

Hello!
I’m wondering if anyone’s child was asymptomatic with their heart issues until around age 4. My child has had a heart murmur her whole life and is now being sent to a cardiologist to get it looked at as I am pregnant again with a baby who was diagnosed with HLHS.
Her only maybe symptoms are bad circulation in her feet and headaches sometimes and blue lips when cold.
So now I’m wondering if she does have a small defect … hard not to spiral!

My doctor is recommending that I have a Reveal implanted heart monitor put in. For those of you who have one, what is your opinion of it? Also, was yours implanted in your Dr office or in a hospital facility? Thanks in advance.

I’m (31F) currently 20 weeks into my second pregnancy and processing some heavy news. My first pregnancy ended in a miscarriage last October. This time, our anatomy scan and fetal echo showed an HLHS variant with a large VSD, overriding outflow tract, azygous continuation, and persistent bradycardia (90–95 bpm).

We’ve had a clear microarray/amnio for microdeletions, and we are currently waiting for the results of a full genetic heart panel.

I’m struggling with the "what comes next" part. For those of you who had a child after a pregnancy with a major heart defect:

• How did you handle the anxiety of the anatomy scan/echo in the next pregnancy?
• Did your doctors find a genetic link, or was it a "lightning strike" event?
• If you moved forward with a subsequent pregnancy, what extra monitoring did you have?

TL;DR: 20 weeks with complex CHD/Bradycardia. Looking for stories of hope from parents who had healthy pregnancies afterward.

Afternoon, for those HLHS that are into adulthood. What advice would you offer for parents who have a child with HLHS. My son is 10 and is doing well, however, there are times when we get little scares about his liver function etc. it’s easy to overreact and overthink about the negative possibilities or outcomes. It’s almost like having PTSD as a parent. I remind myself to focus on what I can and cannot control but easier said than done. I hope this makes sense. God bless

Hello. I am currently diagnosed with VSD and PS (16F). I'm going to have my procedure in a month or so, and I just want to know what I should look out for and do before and after the surgery. Thanks :)

Has anyone had to do that? How did it work for you? My daughter is almost 5 months old and had a VSD and CoA OHS repair at 2 weeks old, leaving her with vocal cord paresis leading to aspiration of thin liquids during her barium swallow study. The ENT said it's gotten better but it's not 100% and he wants to do an injection if it doesn't heal on its own by June. Curious if anyone has experienced this. Thanks!

Im 24 weeka pregnant with a boy who has TGA and VSD. The doctor thinks he also has an atrial septal aneurysm (but could possibly be an ASD) but it is to early to tell. Im just wondering if anyone has experience with this? I didnt get much answers on treatment for atrial septal aneurysms and find it more difficult to find answers online. We will have a new ultrasound at the hospital where the operation (for at least TGA and VSD) will be done in about 4 weeks but want to be as prepared as possible before that.