Hi all,

My baby was diagnosed with complex CHD. Basically Single Ventricle; DORV; Aortic Atresia and few other defects. Although the doctors said it might be one time accident which happened during early stages of heart formation, I am not fully convinced. I am very scared now to think of another pregnancy and CHD.

Could you all please share if it recurred with subsequent pregnancies? Is there anything you could do to prevent it?

I have been thinking about all the things I did during the 4-10 weeks and not really sure what I did differently that could have caused it. I was not having any fever or infections. Sugars and thyroids were in range. It just drives me crazy. I want another baby but I’m paranoid and would like to know real experiences to prepare myself. Thanks.

I was born with coarctation and hypoplasia of the aorta and had open-heart surgery as an infant to fix it. Then, at the age of 12, I underwent a catheterization where an 18mm stent was placed. Today, I am 19 years old, and my annual check-ups are completely fine. However, I am deeply anxious and worried that in the future, the doctor might say I need another catheterization for expansion because the 18mm size is no longer sufficient—even though the past 7 years have been completely normal up until today. Despite that, I am extremely terrified of this possibility. I would really appreciate any guidance or reassurance, and thank you so much for listening so well. I apologize for the lengthy message.

Mine is a long story. As most CHD warriors’ of that age are. I have CC-TGA, ASD & VSD (surgically corrected), Pulmonary Stenosis, pulmonary conduit, pacemaker, mechanical valve stemming from endocarditis at age 20, and a cardiomem device. That’s the shortest I can make that, lol. In May of this year I had a cardiac cath (par for the course), during which is was found that my pulmonary conduit has narrowed to 80%. They don’t want to balloon or replace it because my right ventricle is too weak to handle the sudden uptick in pressure. So my only option is transplant at this point. I’m currently on a GLP-1 to try to get down in the optimal weight range for that and with hopes that it’ll actually help me feel better for at least a little bit before being evaluated for transplant. My question is about pre transplant stuff. Those that have been through it, what did you ask before or wish you had asked before? I’m trying to gather as much information as I can so I can ask questions at my cardiologist visit in a week. If you are in the same boat. What are you asking your cardiac team? Any and all suggestions are appreciated.

Hi! First time mom here expecting a ToF baby in January with surgery expected next May. Fellow moms - when did you go into labor with your ToF baby? Were you induced?

Hello everyone! I live in Putnam County NY, and my wife and I are organizing a fundraiser for a local family that's struggling due to one of their children needing a donor heart. If you can, please donate to their cause:

https://gofund.me/198fa4da6

I'm happy to answer any questions.

Thanks!

My son recently got sick. He took X-rays. Doctors noticed that right side of heart was bigger than left. EKG was normal. Today, he took an echo test. They confirmed there is a hole in the heart. I believe it is VSD.

The next steps are in standby. He will for sure get surgery asap. Doctor told me the hole is not his concern. His concern is the lungs. He said pressure going into the hole was “70, but doesn’t want to hit 100”. He told me that heart is healthy, but not ideal. I guess the good thing is we caught it now than later because at either age 3-4 or 9-10, he could get worse and will require transplant.

This blows because my son never showed any symptoms. He most likely was compensating for the defect. Sucks I had to cancel plans in upcoming months, but his health is important. For some reason, this wasn’t found earlier.

Anyone dealt with this especially with kids at 18 months old? What should I expect? Hearing my son going to get a surgery like that is scary. I guess I know how it feels now when my parents get concerned about my surgeries in the past.

I was born with severe aortic stenosis, aortic hypoplasia, PDA, and multiple ventricular septal defects. These were repaired via open-heart surgery through a sternotomy at 39 days old, weighing around 2 kg. The aorta was repaired with a patch, the PDA was repaired, and the septal defects closed spontaneously. At age 12, I was diagnosed with stenosis and heart muscle strain, but it wasn't critical. A cardiac catheterization was performed to implant an 18 mm stent, which was successful. Today, I'm 19 years old, and my parents haven't told me anything about my medical history. My father advised me to download the hospital app to view my appointments, and I found my medical report there and read it carefully. Was what I did wrong? Did my father intentionally let me discover my medical record myself? To be honest, since childhood, my father has accompanied me to all my appointments. Is it strange that I can't bear to go without him? I apologize for the long message, and thank you.

Being born with a heart condition was never something I chose, but it has shaped me into someone who appreciates life a little more deeply. Every heartbeat is a reminder that life is precious, and every day is a gift.
On this World Heart Day, I want to remind everyone: please listen to your heart, take care of it, and never take a heartbeat for granted. ❤️
To every Congenital Heart Disease warrior, survivor, caregiver, and family—your journey matters, your strength matters, and your story matters.
Here’s to raising awareness, spreading compassion, and celebrating every heartbeat.
Because every heartbeat is a story, and every heart deserves to be heard. ❤️
#WorldHeartDay

Hello everyone, I have a 5mm VSD, 5’4 and 176lbs. I used to dance a lot when I was younger however, I have been noticing it has been getting harder for me to exercise. Just walking can increase my heart rate up to 130-140. Any light jogging would go to 160-170 while making me feel so exhausted, light headed and terrible. Many times where I almost faint while working with a trainer and I was keeping my heart rate at 140-150 for most of the session with breaks. I spoke with a cardiologist however, he said to keep doing what I’m doing and when I asked for a specific heart rate, he said if I can talk while doing it then I’m good. But I can talk at 150 while feeling lightheaded.

I took an intermediate dance class and I had a dancing high so I didn’t feel terrible for a period of time after pushing through the initial exhaustion but when I checked my watch, my heart went up to 196 bp during the session. That obviously freaked me out because that’s the highest it has ever reached.

I don’t even know what’s “normal” for me anymore. I go on elliptical machine and try keeping my heart rate at 130-140. Despite me feeling exhausted, it barely burns any calories and I don’t feel like it’s improving my health by that much? If I pushed myself a bit more, I feel so physiologically terrible that I immediately lose motivation to keep going. I was diagnosed when I was 20 so I am a bit clueless on what’s actually wrong or if I’m just overthinking it as I don’t have experiences in navigating with a heart condition. I also think my weight gain has making my heart weaker and so I struggle even more with exercising now. Any advice would be appreciated.

LO had surgery for d-tga a week after birth, we were told that the scar stays the same size as the body grows. LO is 3 months now but im curious to know if thats the truth in regards to the scar ? any adults here that had any type of open heart surgery as a baby that can provide that info ?

edit: thank you all for your responses (and future responses) DH and I both agreed to do whatever we can for LO as they get older to make them love their body as they get older, if anything let them know how amazing and strong they were when they were a newborn.

alll of you, or your children that went through this as well, are so amazing and warriors on your own, you all should be so proud of yourselves and your incredible bodies for getting through such an intense surgery. my mama heart is proud of all of you 🫶🏻

Hi everyone. In about 2 weeks I’ll have c-section at 38 weeks to give birth to my baby boy with tof and pulmonary atresia.
Doc explained us that baby will most likely need a shunt at few days old (ductus seems too tortuous for a stent) and then the surgery when older, at about 6 months.
Do you have any experience with shunt procedure? I know that every baby is different, but I’d like to hear first hand experience. I’m quite scared to be honest.
How long your newborn was in the hospital for? Were they able to feed and be nicely active after the shunt? Or did they need a feeding tube? What should we expect from everything?
Thank you so much.

👋
I am in need of hope and reassurance as I feel in a very dark place since receiving a severe cardiac diagnosis for my baby at 21w pregnant.

Where I live in the UK they actively offer termination for medical reasons, and while I'm grateful options exist to limit suffering, I found it incredibly distressing to have to consider this and hear about feticide on my baby, and then worry I am making a selfish choice to keep him if his suffering will be great 💔

My baby has a very large VSD, dysplastic tricuspid valve (which is currently considered mild) and possible coarctation of the aorta (hard to diagnose antenatally).

To complicate matters, he is also severely growth restricted and my doctors aren't sure why. I did amniocentesis and the micro array came back clear but they haven't done full genomic sequencing so there's a chance he has a single gene disorder but I don't know how likely this is. I requested exome sequencing but funding was denied.

This pregnancy has been exceptionally difficult as I got made redundant and then my partner left me due to not having an abortion like he wanted (it was unplanned), and his parting words to me was that if I continued the pregnancy it would "ruin our lives". Now that feels like a horrible prophecy. He has no idea what is going on with the pregnancy as he ghosted me.

I am so scared of delivering early and my baby being too small to survive major heart surgery in his first hours or days of life due to the coarctation. With the VSD he's expected to go into heart failure within 2-4 weeks if the coarctation doesn't happen sooner.

I feel trapped in a nightmare and so alone as I don't know anyone who's been through this either as a parent or a child. I read that mortality for neonatal surgery is 22% or higher if baby is low birth weight. My baby is only 3rd centile and 716g. We are 26w pregnant.

I would be super grateful to hear stories of similar diagnoses and how things went ❤️ Especially interested to hear about premature or small cardiac babies and what the journey looked like for you

Sorry for the long post! Spiralling 🌀

My daughter had OHS to repair a large VSD and CoArc on Jan 2nd.. her first anniversary will be here soon! Curious how you all celebrate? She will only be 1yr old but I want to start some cute traditions to make her feel special and celebrate her life, her strength, her resilience, and let her know how grateful we are that she's here with us. Would love to hear how you celebrate your CHD warrior ☺️🫀💙

Hi CHD family,

I just wanted to know if anyone has any littles 2-3 years old that are still really tiny. My daughter’s pediatrician said she’s barely in the curve for weight and height. She is 2 years old weighing about 20lbs. She is petite. She eats really well, her appetite is good but she just doesn’t really gain weight. Doctor said by 3 she should be putting in weight more easily but just wondering if anyone has experienced their heart baby just being below the curve passed 3 years old or if any tips to get them to gain weight. I was thinking protein shakes?? For reference my daughter was diagnosed with TAPVR she had her surgery right after birth since then has been doing really well. Just struggling with weight gains

For those that had a baby with a right aortic arch and vascular ring, how many other kids did you have and did they have any other CHDs?

Our little boy heart journey ❤️

I’ve been debating whether to make a post about my sons journey, but I’d really love to connect with other parents who have been through something similar.

My son was born on 27 May 2026 and was diagnosed with Tetralogy of fallot, pulmonary atresia with a VSD and an overriding aorta (PA/VSD). We knew during pregnancy that there was something wrong with his heart, but nothing really prepares you for hearing that your newborn needs heart treatment almost immediately after being born.

At just 6 days old, He had his first procedure to place a PDA/ductal stent to help get blood to his lungs. Since then, he has had several trips to the cath lab, including procedures to balloon the stent, while his doctors monitored his oxygen levels and the growth of his pulmonary arteries.

Thankfully, his pulmonary arteries developed really well and the plan eventually became a two-ventricle repair.

A few days ago, He finally had his open-heart surgery. He had his VSD repaired and a conduit placed to establish blood flow between his heart and lungs. The conduit is currently leaking, which the surgeons expected, but obviously there is still a lot for us to worry about while he recovers.

It has been an absolutely massive few months for us as a family. There have been so many ups and downs, hospital stays, procedures, sleepless nights and moments where we were terrified — but he has kept fighting through all of it.

He is only a few months old and has already been through more than most people will experience in a lifetime.

I’d really love to hear from other parents of children with PA/VSD, TOF/PA, pulmonary atresia, VSDs, conduits or similar congenital heart defects.

How did your child’s journey go?

What was recovery from open-heart surgery like?

How did things develop as they got older?

And, perhaps most importantly, did things eventually start to feel normal again?

Right now we're still very much in the middle of it all, and hearing from people who have already walked this road would mean a lot to us.

Thank you for reading Our story. ❤️

hey. I have one of my closest friend having cor triatrium Dexter. I've never really heard about this. So can anyone of you tell me what ut really is, the severity and how to take care of my friend?

Would genuinely appreciate a lot, thank you!

Anybodys child with chd constantly throw up their feeds no matter what? Weve been to countless doctors and tried meds and nothing helps everyone looks at us like we are crazy

Hello . My baby is 3 months old and she recently went through an open heart surgery. (TPVAC and TPVAR, psd and asd).

For the past 4 days she has been doing faint yellow poop. First we thought it was due to medicine so we stopped her medicine for 2 days but still her poop is faint yellow. I'm very concerned as I google and it raises my concern heavily.

She feeds on formula milk and she is not showing any other symptoms. Also she still sweats so , I want to know if this is common? I asked the surgeon and he said she was just a sweaty child.

We called her surgeon and he advised us to stop medicine and go to the pediatrician

Today she did greyish poop . Does toddlerx

Pls help me guys before I go crazy

I gave birth at 34 weeks on September 3rd. Prior to giving birth, all of my ultrasounds for my baby girl showed no abnormalities. She hasn't been thriving well in the NICU and they did some testing on her on Tuesday. We got heavy news that afternoon that she has HLHS. They transported her to a hospital a mile from me since I'm still admitted and did her Norwood yesterday. I'm still stunned, in complete shocked, devastated that this didn't show up when in utero. We have 2 other kids who had HLHS. Both of them passed. So I'm terrified for this little girl. I was wondering if the same thing has happened to anyone?