I'm currently pregnant with a CHD baby who is severely growth restricted (3rd centile) and has a very large VSD + possible coarctation of the aorta+ a mildly dysplastic tricuspid valve which isn't currently causing any regurgitation and we hope remains stable.

I have been briefed that my baby will likely go into heart failure due to his VSD by his second week of life, need pulmonary artery banding before full closure repair due to his small size and likelihood of prematurity (currently FGR , 30 weeks gestation), before a full VSD closure by 4 months old. The coarctation is a maybe for now and may change the management plan to more emergent but my cardiologist was less worried about it at my last appointment. As baby is small it's hard to know if the arch is interrupted or also just small.

I feel like the hospital haven't been very good at providing me information about the practical side of the journey that awaits me as a CHD parent as they have very full clinic lists and race through medical information at our appointments or give me vague answers like "it depends", which I understand as not everything can be predicted ahead of time but it's left me feeling like I have zero idea what to expect.

My questions:

- Birth planning: I've been told my baby's cardiac issues do not rule out vaginal birth as an option and it can help fluid release from lungs but I'm wondering if c section would be safer given 1 in 4 inductions result in emergency c section and my baby is also very small with a potentially failing placenta. But my team say getting back on my feet will be easier if I don't have a c section as I can be my baby's side. How and what did you choose?

- Is my baby likely to come home right away on heart failure meds if he is delivered at term? What weight would he need to be? Would he be in NICU or a general cardiac ward for care? I haven't even bought a crib as I was expecting months in hospital with his surgeries.

- How old and big were your babies when they had pulmonary banding surgery?

- And VSD repair? What was recovery like?

- Recommendations for breast pumps and other things for hospital to make us comfortable would be hugely appreciated.

- Are there any single parents, or people coparenting a child with CHD? My baby's father walked out on me while pregnant as he didn't want this baby. We weren't together long at all and it was unplanned. I don't know how much of a role to let him have given how high stakes decision making is for baby and potentially harmful presence of a reluctant/ hostile coparent in the mix might send me over the edge. So far baby's father has ghosted me since 7w pregnant so he's unlikely to rear his head but if he does, this worries me.

Thank you for your advice! ❤️

I’m 3–4 weeks away from having my third baby, and I’m struggling mentally more than I expected.

My first was born healthy, but my second daughter was born with TOF/PA/MAPCAs after we found out late in pregnancy that something was wrong. She spent her first 5 months in the hospital, coded the night after birth, had a trach and G-tube placed, dealt with severe Tet spells and respiratory failure, and eventually had heart repair surgery. We went through SO much before finally getting to bring her home.

She’s almost 2 now and doing amazing. ❤️

Now I’m pregnant with our third daughter, and everything has looked good! We’ve had the anatomy scan and fetal echo, and there are no identified issues. I’m SO excited to meet her, but I can’t seem to wrap my head around the fact that this pregnancy might actually have a happy, straightforward ending.

I try to pack our hospital bags, prepare for her arrival, and get excited, but there’s this constant feeling that something is going to happen or that we’re going to find out something is wrong after she’s born. It’s almost like I can’t fully believe she’s actually coming home with us.

I know my last experience plays a huge role in this, but I can’t seem to shake the feeling that I’m waiting for the other shoe to drop.

Has anyone else experienced this after a CHD/med baby journey? Did you struggle to believe your next baby would be okay, even when all your scans were reassuring? How did you work through those feelings, and did it get easier once your baby arrived?

I’m so grateful for how well this pregnancy is going, and I don’t want fear to take away from being excited about our girl. I think I just need to hear from other parents who understand what this feels like. ❤️

My son was born with Dextrocardia, heterotaxy, TAPVR, Single ventricle, Bilateral PDA, DORV and VSD...I think i may be missing one or two, but it's a lot. He's my first and only born in December. He had his first open heart surgery in July to repair TAPVR and place a BTT shunt, we have been in and out of the hospital since then with arrhythmia problems that were not as bad before he had his surgery. We admitted to CICU last thursday because of it and has been having on and off days since admission. Yesterday was by far the worst day when 3 different anti arrhythmia meds were administered. I decided to give my wife a break today and not go into work so she could go get some much needed rest in our guest room at the hospital. She decided to stay in our son's room with me while we waited for EKG. After his EKG was done his breathing got very labored, deep and slow. His nurse was tending to his other patient so was already very busy, so one of the EKG techs stepped out to find a nurse. By that point my anxiety and adrenaline were through the roof so I hit the call button and stepped out to see what was taking so long (maybe 20 seconds) and by the time I went back to his room, he wasn't breathing. All I did was yell that he wasn't breathing twice and didnt preform CPR. We were trained in CPR before he was discharged after his birth. I have the knowledge and skills to do it but in the moment all I did was yell for help. Help came very quickly after that, seemed like seconds, but I cant help but feel that I failed my son by not performing life saving measures when he needed me to. It's been a long, stressful and anxiety filled day and just cant shake this feeling of failure. Hes currently stable, sedated, intubated and medically paralyzed, still trying to get arrhythmia under control.

Hi all,

My baby was diagnosed at 21 weeks with A DORV, VSD, and a mild (at this point) pulmonary stenosis. He’s going to need open heart surgery - they’re saying 2-6 months right now but anything can change as he continues to go and more specifically when he’s born. We were seen by the team at the children’s medical center / Hartford healthcare but we’re getting a second opinion from Yale New Haven in 2 weeks.

It’s been tough to find stories to relate to because of course every baby’s anatomy is different. We’re hoping that he’d be able to come home for a bit to bond and put some weight on him, but I’m scared to death about seeing signs of struggle and needing to bring him in early. Part of me just wants the surgery over with so we can get over that jump but obviously I want them to do whatever is best for the baby.

They’re anticipating 1 open heart surgery and potentially another procedure - not necessarily open heart surgery - sometime during adolescence. I think it depends on how the stenosis acts and if they’re able to widen it on their own or if they need to put a patch of some sort in there that will determine that. They’re saying the surgery has a 95%+ successfully rate and he should be able to live a normal life - play most sports and just have a scar and have to see a cardiologist the rest of their life. Is that best case? Or are they just saying that?

We’ve done our best to enjoy the pregnancy as much as possible knowing the difficulty that lies ahead. Anyone with this same diagnosis?

Should I expect complications? Can things get worse and are they more likely to get worse than stay status quo?

Will we really know what to do if something happens when we bring him home?

This is my first child so part of me is thankful that I don’t really have any other birth to compare this too so maybe it’ll make it easier when they take him from me once he’s born and he has to stay in the NICU to watch how his heart behaves.

I ultimately just hope that the first 6ish months of his life will be difficult, but compared to his life it’ll be a blip in the radar - something that might traumatize my husband and I but something he’ll never remember.

Any similar stories - please share. I’m 24 weeks this week.

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?

​

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 ❤️