Hi! My baby is almost 7 months old. She got surgery to fix her double aortic arch about 2 months ago (at 5 months of age). Surgery was successful but it turns out the nerve right by the left vocal cord was punctured. Her left vocal cord is paralyzed.

We also noticed that she has been having cold like symptoms on and off the past 2 months.
And noisy breathing especially while eating.

At first, we just thought this was normal inflammation and irritation from surgery. But when we brought her back from a normal ENT checkup a month postop, they confirmed that the left vocal cord was paralyzed. Apparently at first post op, they weren’t able to see this.

We did a swallow study today and found out from the swallow study that she is aspirating. But other than the aspiration and noisy breathing sometimes, she is healthy otherwise. Very happy baby. Pretty active. Just was curious if anyone else had dealt with something similar. We are currently trying to give her the breastmilk with oatmeal in it to thicken the milk as an initial solution. Hoping this will help.
Anyway, just curious if anyone else has gone through this or has any advice. Apologize for my awful punctuation. Have only a minute to write this as I am scrambling around because my toddler is wrecking having in my apartment.
Thanks

Hi everyone,

I'm looking for some guidance on behalf of a pregnant woman with a connective tissue disease. Fetal ultrasound has shown fetal heart enlargement and tricuspid regurgitation. We're trying to decide between Melbourne and Brisbane for public hospital care and would really appreciate any firsthand experience or local knowledge.

Specifically:

1. Which city's public hospitals are generally better set up for this kind of complex fetal cardiac case?

2. Are there specific specialists (fetal cardiologists, maternal-fetal medicine specialists, or combined clinics) who deal with fetal heart issues related to maternal connective tissue disease?

3. Any experience with referral pathways, wait times, or combined obstetric/rheumatology/fetal cardiology care?

From what I've gathered so far, Melbourne seems to have more clearly identifiable fetal cardiology expertise (e.g., The Royal Women's Hospital, Mercy Hospital for Women), while Brisbane's Mater Mothers' Hospital has a well-established maternal-fetal medicine centre but less publicly listed info on specialists for this specific combination.

Would love to hear from anyone who has been through something similar, or who works in the system. Thanks in advance!

During my son’s routine 4 year wellness check the doctor detected a heart murmur, that prompted a heart ECHO which revealed that my son was born with a congenital heart defect (partial AVSD) that had gone undetected until now. He has been asymptomatic so this has come as a complete surprise to us.

Anyone else go through something similar?
We have a cardiology appointment in a few months to go over what our next steps will be.

Everything I read online indicates my son will need to have his defect surgically repaired (open heart surgery) so we are mentally preparing ourselves for that.

Just looking for some support or advice from anyone who has gone through something similar.

Hola!!

Este último año hemos consultado a distintos médicos tanto de México como de Estados Unidos y Perú, y nos dan un alto porcentaje de riesgo en intervención a nuestra bebé, en esta incertidumbre y poca garantía de éxito, nos ha llevado a buscar a personas ya adultas o personas que hayan tenido personas adultas cercanas con Atresia Pulmonar con CIV que no se hayan sometido a intervenciones y que nos puedan contar su historia de cómo ha sido experiencia de vida, su calidad de vida y cómo lo han sobre llevado.

Agradecemos se abran a contarnos sus historias honestas, los doctores nos dicen que no es posible vivir con calidad ni con cuidados paliativos con esta cardiopatía y que el índice de vida es bajo. Aún no hemos tomado decisiones pero creemos que con información podremos hacerlo con mucha más claridad, pues no quisiéramos tomarlas por miedo e incertidumbre de que podría pasar.

GRACIAS 🙌🏼💫❤️‍🔥

Few questions in this so sorry in advance. My guy is 10 days post op from a repair. We went home with an NG for feeding as he had a bottle aversion in the hospital. We’ve been home 3 days and the first two days were promising with NG weaning - he was only needing like 1.5 total feeds of NG and was taking full bottles pretty well. Well today on day 3 home he won’t take a bottle at all. All feed have gone through the NG. Would only dream feed at night. I’m not sure if this acute change warrants concern (I will be calling his cardiologist tomorrow) but just want to hear others thoughts. He is also prescribed 130mL every 3 hours. We haven’t been feeding on a set schedule as he never ate like before and instead have been trying to follow hunger cues and then top off with the NG whatever he doesn’t take from bottle at feed time. We haven’t been letting him go over four hours without eating bc then there’s too much catch up at the end of the day and his stomach hurts. He only took 28-32oz of breastmilk pre surgery and his team has prescribed 35oz in a total day. This also just seems like a lot. I know he has increased metabolic demand and needs to catch up on weight a bit but I also don’t know if this is too much and he’s just genuinely not hungry when we offer. He isn’t crying or pulling away from the bottle just won’t eat more than 40-70mL at a time. I do have all the appropriate specialities and doctors to call on Monday about this - just curious what other peoples experiences were post repair with their baby and the NG. My concern is his heart is straining too much. He’s been so sweaty since coming home with activity but not with feeding. He’s also not sleeping and is so irritable (I know it’ll take time to find a groove at home again) but with the regression in eating in one day I feel like it might warrant concerns ya know? Anyways thanks in advance!

Hello! Good day. 😊 I am a student nurse in the ph, and we are currently conducting research on the experiences of parents who care for a child who has undergone open-heart surgery. I thought any of you might be able to take part in our research. I would like to ask if you would be willing to be interviewed about your experiences. Please don't worry. Participation is entirely voluntary, and we will understand if you are uncomfortable or unavailable. Thank you very much for your time, and we hope you will consider our request. God bless! ❤

my daughter is still undergo tests. every week she needs to do 2decho & ecg. small amount can be such a great help for her expenses. 🙏😞

Hi everyone! I'd love to hear from people who have undergone surgery for an ascending aortic aneurysm, aortic root replacement, aortic valve replacement, or a Bentall or David procedure.

- How old were you when you had surgery, and what procedure did you have?

- How difficult was recovery, and how long did it take to return to normal life?

- How has your quality of life been since surgery? Any long-term complications?

- **Have you noticed any changes in your sexual function after surgery**, particularly erectile function, libido, or sexual performance? If so, did things improve over time?

- Did heart medications, such as beta-blockers, affect your sexual function?

- How long did it take you to resume sexual activity, and did you have any concerns about safety?

I'm particularly interested in experiences from people who had surgery in their 20s, 30s, or 40s.

I'm looking for honest personal experiences, not medical advice. Thank you for sharing your stories!

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. 🙂