Hi there, my daughter had OHS last year November for her PM VSD fix. She is now at 21 months still weighs 7.82kgs and her height is 78cms. We had our cardiologist appointment today we are stopping all medications now! Only concern is her weight!!
Are there any tips you can share for me !?

My son had his 18 month check up and it was determined that he is delayed. He only says “ball” and “bye bye”. He was in the hospital for his first 3 months, then was sedated for a month after his open heart surgery at 8 months.

Do you guys think this is normal for CHD babies that have experienced a lot of hospital time?

His brother is 6 and has level 3 autism so I feel like I’m hyper focused on his development…

Looking for some advice/ reassurance…
My baby was diagnosed with a VSD at 3 months old- we were told it was small and would cause no problems and to see the cardiologist again at 1 years old.
We just seen the cardiologist again this week. Heart is the same, nothing has changed and they’ve said the same- heart is strong, no symptoms, just live as if it’s not there and come back when he is 3.
I can’t help but be paranoid? I can’t get the thought of surgery out my head and it’s making me anxious. The cardiologist did say he will never be ill with this and that nothing can change overnight but when I asked about potential surgery in the future he didn’t give me much. He said at the moment surgery is not on the table for my son but I can’t help but worry. Anyone else had something similar?

This is what the doctor note said : Echocardiography was performed. This showed good ventricular function. Small subaortic VSD seen with left to right shunt of high velocity, 4 m/sec. No dilation of left ventricle detected. The function of mitral valve, aortic valve, tricuspid valve and pulmonary valve was normal. Tiny PFO seen. No duct flow detected on aortic arch was unobstructed

Ours 2 month baby was in the hospital for 2 weeks with a virus she couldn’t kick. During the stay they found the vascular ring around her throat and esophagus. She has always been such a hard breather and noisy baby so that made sense.

She had the surgery last week which was a success. They showed us just how constricted her throat was before and after. I assumed with how tight the airway was that was the cause of her loud breathing and noisiness. But a week after surgery she is still as loud as she was. We have her follow up appointment coming up. Did it take time for anyone’s baby to not be so noisy after surgery?

32 female that had VSD repair when I was 8 months old. My childhood cardiologist always told me that I'd need to be monitored for life. I went from having an echo once a year and then every three years as I entered my teens. When I became an adult, no cardiologist or pcp decided that it was necessary to see a specialist regularly anymore. For the last fifteen years, I've been having skips or flutters daily (sometimes a few a day to many a day) and 5 years ago, started developing shortness of breath with minimal activity that has seemed to have gotten worse this year. 3 years ago, I developed preeclampsia and during postpartum I noticed that my heart rate would be slow a lot of days (low 40s) and I still have days where it is this low and I'm fatigued. I have had RBBB for years. I've had a couple event monitors in the last decade that pick up pvcs but nothing else concerning. My last echo was 3 years ago during pregnancy which was normal but the way my symptoms are being dismissed as my fatigue and shortness of breath are getting worse, I'm concerned.

I have an echo next month. I guess I'll wait for results and then ask to be transferred in care of an ACHD specialist. Attached is the message from my care team. I'm not athletic (I'm obese) so this message seems really ridiculous and dismissive to me.

Hi everyone,

My baby is due for his open heart surgery on Thursday for a 10mm subaortic VSD. His aorta his slightly shifted to the right but apparently this doesn’t impact the surgery and it will be the same surgery as a regular VSD. He had IUGR and weighed 3lbs 12oz at birth at 36 weeks and is now about 11lbs. We are both terrified but also relieved that our baby gets to feel better soon.
We were told that the biggest risk for this surgery is that it could damage the electrical conduction system of his heart and require a pacemaker, but that is is unlikely is his case as his tissues have had time to grow.
I guess I am just looking for reassurance that everything is going to be okay. I am not looking forward to seeing him plugged to all these tubes and cables and hope I am strong enough not to fall apart completely. Our hospital also has a one parent policy at night for the duration of his stay and I am worried about not having my husband by my side, I just know I will be crazy anxious.

Any positive story is welcome !

Many thanks in advance

Hi everyone, dad here. My 2-year-old son has cardiomyopathy and is currently on a LVAD, transplant listing Status 1A, waiting for a donor heart.

We’ve been told roughly 10-12 months wait time for donor, and we’ve already had a very difficult journey, including a recent stroke from which he is recovering thankfully.

I’d love to hear from others who’ve been through this or dealt with pediatric heart transplant

How long did your child wait?

Did the actual wait end up close to what your team predicted?

How did you manage day-to-day life on the LVAD while waiting?

What helped you mentally get through the uncertainty?

How did you handle the fear of complications or another setback?

How did you cope as a family, especially with
siblings?

Did you find ways to still have “normal” family moments during the wait?

How are you and your child doing now?

Just looking for some real experiences from families who’ve walked this road. ❤️

Curious if anyone else has seen this in their family. We are up to 3 generations all having ASD and requiring a repair. It seemed to started in my mom and all 3 of her kids needed surgery for it and now up to 3 grandchildren all need the repair too. We're all hoping to still have more kids and we're curious to see how many end up with it, but doctors seemed surprised every time it comes up that it's been so strong in our family.

My child and I have started genetic testing, but waiting on results to see what comes from it still.

Anyone else seen similar in their family?

Dearest mod, please don’t delete my post. I am waiting for a transplant, not going to get a call anytime soon as I am home and a low status. I know that I know what I should pack, but just wanted some ideas. I’m a guy in my 30s
Thanks

I was born with a hypoplastic right heart and pulmonary atresia. I had the standard 3 step surgeries ending with a fontan circulation. My O2 sats were always low 90s, upper 80s and I do have multiple collaterals that are still open. I am 39 years old and the last 3 years have been going downhill.

My cardiac cath numbers look good, according to my cardiologist, but I do miserably during any CPET and I generally feel terrible.

Starting early 2025 I had reoccurring AFib/AFlutter episodes that they had to shock me out of, then they decided to do an ablation near the end of 2025. Everything seemed good afterwards, until about a month later.

I am currently in cardiac rehabilitation with the goal of weight loss and hopefully strengthening the heart (I am about 40lbs overweight). But it is kicking my ass.

The odd symptoms I've been having are as follows: I can do my workouts (including the 40min of cardio) but I do get a slight tightness in the chest and the feeling like I'm short of breath/can't get a deep enough breath. I'm usually pretty good for about an hour afterwards, but as the day progresses I generally start declining. Chest will feel tight up into my throat, breathing burns (burning isn't exactly it but I don't know how else to describe it besides irritated/burning) and that feeling worsens the deeper the breath I take. My lungs will feel heavy or full (not with mucus or fluid) --- the feeling honestly reminds me of when you smoked too many cigarettes the day before and now your lungs feel clogged/heavy/smoke filled (I am 3yrs no smoking). These symptoms progress as the day goes on, getting worse the later it is... but stress also brings it on harder and faster. The strangest part, I can wake up the next day and feel almost fine, or I can wake up with the same symptoms just not as bad as when I finished my day the day before. Even weirder, I can still do cardio exercises with these feelings, in fact, everything except some slight tightness in the chest and shortness of breath just goes away during my workouts... Only to reappear shortly after (and usually worse). Light/casual walking doesn't help the symptoms like an intentional cardiac workout.

Sorry if anything is confusing, I just don't understand what is happening and getting my thoughts straight has been difficult lately. I've reached out to both my cardiologists but neither have answered back. These symptoms aren't new, but they haven't lasted for 2 weeks straight before either.

Does anyone else have similar experiences? Maybe an idea of this is 'normal' for fontan issues or if I should be thinking something else?

Btw: my O2s now are about 90 when I sit still and do nothing (or laying down), ~87 when sitting and doing things (talking, computer work, etc) and get 85 to upper 70s with movement (more movement, lower it goes). My cardiologist is waiting to see how I do with cardiac rehabilitation before deciding on whether to complete a heart transplant eval or not (hoping weight loss will solve the problem?).

Hi everyone,
We are Indi, Betty, and Edie. We are currently working on Project PulseGuard, a tech-driven safety ecosystem designed specifically for teenagers and young adults managing chronic cardiovascular conditions or living with ICDs.
The Problem: Mainstream smartwatches only detect hard-impact falls (missing when someone faints and slides down a wall). Devices that do monitor heart emergencies are designed for seniors and look like bulky medical monitors. This leaves teens feeling isolated, anxious about missing out, and forced to choose between style, independence, and safety.
Our Solution: The GuardWear Smart Band. It looks like a normal fitness tracker but actively monitors pulse and heart rate for sudden, dangerous vital sign changes. If an emergency happens, it automatically calls emergency services with live GPS and texts parents.
We want to make sure we are building exactly what the community needs. If you are a teen/young adult with a heart condition, or a parent of one, could you please take 3 minutes to fill out our Google Form?
https://docs.google.com/forms/d/e/1FAIpQLSd3xMY3vdE5Mcg6CceZXP3cQNElGFgE7bDx5bC-yEBCqXqeZA/viewform?usp=publish-editor
Thank you so much for helping us give young patients both freedom and protection! We'd love to hear your thoughts in the comments below as well.

My husband incidentally found out he had a 2.7 cm Primum ASD a year and a half ago. He had OHS to repair with a patch, and we were assured that was completely and permanently handled. A few weeks ago they did an echo to get a baseline normal, sound a suspected leak on the patch. TEE confirmed the leak, 1.0 cm, but they haven’t told us where it’s located/how it will need to be repaired. MRI coming up in a couple weeks to get more info.

Thoughts on this? Specifically was this surgeon error or bad luck? Odds of avoiding another OHS to repair it? We are already mentally preparing for another surgery as it seems that’s where we are headed.

Hello, not really looking for advice, just others experience and stories from parents on the other side. My daughter was born after a traumatic birth at 38 weeks, she was diagnosed with ToF with PA at the 20 week checkup so nothing was a surprise. But she’s been in the PICU for 5 days, and I have yet to be able to hold her. We had a long night last night after she had bloody stools and progressively low bp and while she’s much better today they’re not sure why. Today the whole team is supposed to be getting together to discuss her treatment plans and I’m anxious. How long were your babies in the ICU and how has it all progressed?

I am a senior nursing student at Texas A&M University. I am conducting a project on the implications of undiagnosed congenital heart defects. In this project, I will be holding online focus groups to understand more about the lived experience of people who went undiagnosed with a congenital heart defect until the age of 10 or older. The goal of this project is to gain a better understanding of your experiences throughout your cardiac medical journey. I want to be able to advocate for your community more in the healthcare field. Whether you want to share your story, difficulties you had getting diagnosed, or how this condition has impacts your daily life, I would love to hear your feedback. 

I am attaching the link to an interest survey if you would like to join a short focus group. Thank you so much for your time and consideration. I would greatly appreciate your help in supporting my research to create better care for the CHD community.

Link to join a focus group: https://tamu.qualtrics.com/jfe/form/SV_0uCW60CAEUkZdJQ 

Hi everyone! My name is Taliyah, and I was born with a congenital heart condition called Shone’s Complex. I’ve had 7 open-heart surgeries, and I currently have a mechanical valve and pacemaker, along with more hospital procedures and visits than I could ever count.
I’m now preparing for my 8th open-heart surgery, and this one is more complex than my previous surgeries. Because of that, I’m seeking specialized care at Cleveland Clinic.
Traveling out of state and going through another major surgery comes with a lot of expenses that are more than my family and I can manage on our own, so we created a GoFundMe to help with the costs.
It would truly mean the world to me if you took a moment to read my story. If you’re able to donate, even a small amount helps. And if you can’t donate, simply sharing it or sending some love means just as much. ❤️‍🩹
If donating through GoFundMe isn’t easiest, I also have Cash App available: $Sarahhp86 🤍
Thank you for taking the time to read this and for supporting me through this next chapter. 🫶🏻

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?