So I am 22 and in my last year of undergrad with HLHS, I will admit I do not have the most heart healthy life and should eat more salads, but I sleep easily 9 hours plus (some days 10-12+) and I still wake up tired and I am tired all day after 2 redbulls (like I get up, have my 2 before a class, have lunch after class, than I can go home and sleep 4 more hours).

I am in the process of getting rid of my cardiologist because long story short, my doc at my old center was leaving and I am both planning on moving across the country, but also don't like any of the centers here (I was at Children's Wisconsin, now at Northwestern/Lurie). I am wanting to go to UCLAs program, not just because I plan on moving there post grad, but I want to be at that program in general, even if it means flying for appointments. Should mention, I only made appts at Lurie and Northwestern because of my moms pressure, I actively want to not go there. My cardio at Lurie made note of some issues (the sleep issue started since) but other than a note I was having chronic pain (this is ongoing unaddressed for years and has created falling issues), no change from the last center. No diagnostic cath yet, my last Dr said it was fairly urgent, while this new one is like 'maybe in the next 2 years'.

To add, I had a vit D test at a time it would be low, said it was abnormally low (16, which is low for me), I want to add context that I live a very low calcium diet because I have historically (other than like twice in my life) had normal to high vit D and normal to high calcium. PCP (Northwestern, I don't think he had access to my history) of course wanted to start supplements, I explained the discrepancy and he mostly brushed it off. My cardio was less dismissive of it, but without looking at my history, mostly agreed with the primary.

So I am now looking at dropping both (for sure the cardiologist) because I feel I am being ignored to the point I am risking my own health

Anyone have had similar issues, medical or with a doctor?

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Hi everyone,

I wanted to share our experience as parents of a baby born with a congenital heart defect.

Our son was born on July 6, 2026. At just 2 months old, he underwent open-heart surgery to repair a ventricular septal defect (VSD), a hole between the two lower chambers of his heart.

The surgery was performed in Geneva, Switzerland, by the highly respected Professor Tornike Sologashvili, an incredibly skilled cardiac surgeon. We are deeply grateful to him and the entire medical team who took care of our little boy.

Seeing our tiny baby undergo such a major operation at only 2 months old was an incredibly emotional and frightening experience.

The surgery and recovery

During the operation, the surgeons discovered some fibrous tissue that was affecting the closure of one of his heart valves. This resulted in a very small residual valve leak (regurgitation). The medical team explained that the leakage was extremely minor and was not expected to have any significant impact on his health.

After surgery, our son spent two days in intensive care.

The first days of recovery were not easy. When he started drinking milk again, he would vomit almost every bottle, although he didn't seem to be in pain or discomfort.

We also noticed occasional drops in his oxygen saturation, sometimes reaching 75–80% for several seconds before returning to normal. Those moments were particularly stressful for us as parents.

The doctors explained that his heart was temporarily tired following the operation and needed time to recover.

How is he doing now?

I'm very happy to say that our son is now doing well!

He has recovered significantly since the surgery, and one of the biggest improvements we've noticed is his feeding. He is now drinking his bottles much better than before, which is such a relief for us.

Seeing him recover, feed better, and regain his strength after everything he has been through at such a young age is an incredible feeling.

Of course, he will continue to have regular cardiology follow-ups, especially to monitor the small residual valve leak.

We are incredibly grateful to Professor Tornike Sologashvili and the medical team in Geneva for giving our son the best possible care.

I wanted to share our story because, before the surgery, the thought of our 2-month-old baby undergoing heart surgery was terrifying.

Today, seeing him doing so well reminds us how remarkable modern pediatric cardiac surgery has become.

To all the parents going through something similar with their little ones, I'm sending you strength and hope.

My baby had his repair two days ago. Surgery was harder and longer than they expected and he had two bypass runs. POD1 he had some bleeding and decreased rv function and remained intubated until POD2. He’s extubated and so delirious and out of it. All he does is cry. He won’t eat yet. It’s so hard to watch him suffer. He is having some coagulopathies still with his labs and they think his liver is still congested due to his right side still adjusting. I’m a mess watching this. I know kids are resilient and I know he needs time. I’m just agonizing about his suffering now and his future. He’s almost died four times on me in the five months he’s been here. It’s a lot and I just want him to have a happy healthy life. That’s all just a sad mama struggling a little bit next to her baby’s icu bed.

Hi all,

Looking for advice, suggestions, experience. My girl is 4.5 months, and we are awaiting our VSD and artery stenosis repairs (anticipating sometime between Thanksgiving and Christmas).

I am debating on trying to start sleep training in the next month or so. I am curious how of you had your little one undergo their surgeries, were sleep trained, but after surgery kind of moved backwards and had to start again?

Is there a benefit to waiting until after surgery to do this? Appreciate any and all insights. 🙂

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.

Salut tout le monde,

Mon bébé doit subir une opération de cœur ouvert jeudi pour un VSD sous-aortique de 10 mm. Son aorte est légèrement déplacée vers la droite mais apparemment cela n'impacte pas la chirurgie et ça sera la même opération qu'un VSD classique. Il a eu une restriction de croissance intra-utérine (RCIU) et pesait 1,2 kg à la naissance à 36 semaines et pèse maintenant environ 5 kg. Nous sommes tous les deux terrifiés mais aussi soulagés que notre bébé puisse bientôt aller mieux.
On nous a dit que le plus grand risque de cette opération est qu'elle pourrait endommager le système de conduction électrique de son cœur et nécessiter un stimulateur cardiaque, mais cela est peu probable dans son cas car ses tissus ont eu le temps de se développer.
Je pense que je cherche juste une assurance que tout ira bien. Je n'ai pas hâte de le voir branché à tous ces tubes et câbles et j'espère être assez forte pour ne pas craquer complètement. Notre hôpital a également une politique d'un parent par nuit pendant toute la durée de son séjour et je suis inquiète de ne pas avoir mon mari à mes côtés, je sais juste que je vais être folle d'anxiété.

Toute histoire positive est la bienvenue !

Un grand merci d'avance

EDIT POST SURGERY : the surgery was a success ! Took a little longer than expected as the position of the VSD was awkward and more similar to a DORV, but the result is great. Baby is on room air at 4 days post op and thriving. We got our first smile back today. If you are going through something similar, have faith, these doctors are amazing and your baby is crazy strong ❤️

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?).