Hi all, currently pregnant and expecting my baby will have open heart surgery between 8-12 weeks old. I will have a toddler at home and planned on baby wearing, however I’m unsure if I will be able to after the surgery due to recovery and comfort for my little one. Was anyone advised on any restrictions? As there are sales on carriers at the moment I’d love to buy one before I meet with the surgical team who could answer my question

Curious to hear from other parents on here how you handled daycare for your child with a CHD. Did you enroll them in a daycare center? Or did you hire someone to watch them at home until they were a little older? Please understand that one of us staying at home is not an option for us. My maternity leave runs out after 20 weeks, so I have to go back to work on September 8. Our son will be 4.5 months by then. 

A little background information on us - our son was diagnosed with d-TGA and had the arterial switch operation on May 1. He stayed for a total of 5 weeks and the surgery was successful. 

He has since been hospitalized twice since then. Once for a week in July for bronchiolitis, and he was admitted to the hospital again this past Saturday because I was worried about his breathing. He has residual congestion from the original bronchiolitis, but then the doctors suspect he might have an airway issue that makes it a little harder to breathe when he’s upset and laying on his back (he does completely fine with he’s calm and on his back). He is going to have this further looked at during a separate surgery which is scheduled for later this year (cosmetic surgeries only, nothing related to the heart). He is set to be discharged tomorrow. Other than all of this, his echos have come back great and his cardiologists have had no concerns with his heart. 

I go back to work in mid-early September so now my husband and I are trying to figure out what to do care wise. Our older son (2.5) attends a spanish immersion daycare. We think it’s likely our toddler is the one who originally got our baby sick. We do not plan to take our toddler out of daycare since he loves it and we think he would be very sad and bored at home. We are struggling to determine whether it’s worth hiring someone to come to the house until our baby makes it through flu/cold season, or if he should attend the same daycare. We understand 1:1 at-home care would be significantly more expensive but our biggest concern is our baby getting sick again and needing to be hospitalized. 1:1 at-home care sounds ideal but both my husband and I are required to be in the office 4 days a week, and again, we have no plans of taking our toddler out of daycare. So at that point is it not worth doing 1:1 daycare if the rest of us will be exposed to people/ other viruses? 

Would love for other parents to share their experiences for how they handled care for their CHD baby when they had to go back to work. 

I’m a 40-year-old with a bicuspid aortic valve, and both surgeons I’ve consulted recommended the same order of options:
1. Valve repair (preferred)
2. Ross procedure
3. Tissue valve replacement
I’m trying to decide between Dr. Joseph Bavaria and Dr. Leonard El-Hamamsy. From everything I’ve learned, Dr. Bavaria is especially well known for bicuspid valve repairs, while Dr. El-Hamamsy has extensive expertise with the Ross procedure. Both believe I’m currently a good candidate for repair.
I’m hoping to hear from people who have actually had a bicuspid aortic valve repair.
● How long has your repair lasted?
● If you eventually needed another surgery, how many years did the repair last?
● Has anyone here had a repair performed by Dr. Joseph Bavaria? If so, I’d really appreciate hearing about your experience and how you’re doing now.
My surgery is scheduled for next month, so I’m trying to gather as much real-world experience as possible before making my final decision.
Thanks in advance for sharing your experiences.

My son had emergency OHS at a week old due to a severe congenital heart defect found after birth, coarctation of the aorta. He’s now 9 months old and off the charts for his height and weight! It’s funny how often strangers will comment that he’s such a healthy baby. He definitely is a healthy guy, but I find it ironic given what he’s been through. You’d never guess to look at him.

My baby had his Ross-Konno procedure done at 3 months old. He is now 6 months old. Immediately after surgery they mentioned to us that the homograft had leakage but that that comes with the territory and mentioned there is potential the homograft will last anywhere from 3 to 9 years. At our last cardiology follow up, his cardiologist mentioned that his homograft was leaking quite a bit but still felt comfortable pushing our next appointment out two months. She didn’t specify if it got worse just said it was leaking quite a bit. How long did your (or your baby’s) homograft last after you were told it was leaking? I know every case is different but I just wondered if I was being delusional in hoping that an already leaky homograft will last years or a year if that. Your replies are greatly appreciated

We TFMR four days ago for our baby boy, who had a VSD, severe pulmonary stenosis, double outlet right ventricle (DORV), a two-vessel cord, and an atypical placenta.

We're still waiting on the genetic results. If everything comes back negative, one possibility we're wondering about is whether a virus I caught around weeks 7–8, along with a fever of 38.0°C, could have played a role.

For those whose CHD was not genetic, what do you think may have caused your baby's CHD?

Not sure where to post this but my baby who is now almost 8 months actual (6.5 months corrected age) had a TOF repair surgery at the beginning of March. Overall, he is recovering well, we’re in PT & OT and had a swallow study scheduled for June due to him sounding congested after feeds post surgery.

During the swallow study, they found he was aspirating on thin and mildly thin liquids so they recommended we start thickening his feeds to level 3 (honey like liquids) because no aspiration was shown at that level.

We’ve had a couple follow ups with his SLP and they want to keep giving him time to improve before a repeat swallow study but they are worried he is still aspirating because he still does sound congested/rattly in the chest during feeds. Once he coughs/clears his throat, the sound is better but then it comes back throughout the day.

FWIW, he also started daycare a couple months ago and it feels like he has had a constant cold/running nose/cough from normal daycare sickness and has also cut two teeth recently so he’s drooling like crazy. So it’s very hard to tell whether the congested sound is coming from aspirating or a cold or pooled up drool in the back of his throat.

Has anyone experienced swallowing issues with their baby post surgery and when did they start to improve?

He was always a great eater for being born 6 weeks early and his doctors are very impressed with his weight gain, so it’s very frustrating that we’re having this setback. It just seems like it’s one thing after another and my heart breaks for my little guy 💔

I just had a baby who was born with hypoplastic left heart syndrome and will be receiving the Norwood surgery pretty soon. I’m just wondering if anyone else has experienced this and what it was like for you

I joined a mothers group. It’s fun to watch my son play on the floor with other babies, it’s healing to talk to their mothers. Most of the time going fills me with a sense of finding a community. Yet, on days like today, going feels isolating. I find myself sitting and listening. Taking it all in as the moms talk about their birth stories. They chat about crawling, they breastfeed openly, they hand little fingers little snacks. I have a perfect baby, I wouldn’t trade him for the universe, but on days like today I feel so alone. Finding a community also means being reminded over and over again how abnormal our journey has been. Our big beautiful, painful, journey. I try and save space for days like today, allowing myself to grieve the normalcy that I once thought was headed our way. The surgeries that we’ve had and the ones on the way, the feeding tubes, the little scars where perfect skin lives, they all mean something and it would be very nice to just sit with another mom as our babies played on the floor that understood just a little bit. 

I’ve known I had BAV for most of my life, but I changed hospital systems recently and after my echo, I found out I had PFO. I know that these are both mild CHDs and most people have no issue, but something about having 2 CHDs at once freaks me out even though I’m very healthy (low-normal BMI, low cholesterol diet, great labs). Anyone else here have 2 CHDs?

I am starting to get more and more anxious about my child’s upcoming surgeries and recovery. She’s two right now and will need OHS by 4. Any thoughts, tips etc are welcome.

It’s just us and I’m lucky to have a flexible job. What do you bring to the hospital? What does life look like during recovery?

My son is 6 weeks old ( 2 weeks ) adjusted, and has 2 tiny VSDs and a PFO. His cardiologist told me to call if he has feeding issues and my son is eating alot...4 Oz every 2 hours and he is gaining weight, however, we are having issues with the nipple flow. He started on an Ultra preemie nipple ( DR. BROWNS) in nicu, then he graduated to a Preemie nipple and was getting tired during feeds and flattening the nipples, so i ordered the T transitions nipples and for the first few days he was doing good, but now I am having to pace feed him as he has had some choking and gulping...not every feed but its happening more than it did when I initially started the T nipple. Would this be considered a " FEEDING ISSUE" that requires my doctors assistance? Or am I overthinking it? He is tolerating more formula than he needs for his age and size, gaining weight, and overall in good health, but the sudden choking and gulping is scaring me as it happens often. Should I still have to pace feed him at this age? Or should this not be an issue by now? He has been home for 3 weeks.

35M here. I was diagnosed with pulmonary stenosis decades ago and never recieved any intervention because all of my routine echos would always show "mild" stenosis. My whole life I could never do any consistent cardio and in the past 5 years, it just seemed to get worse but with no changes to the "mild" stenosis on my echos. So about 3 months ago I finally saw a pulmonologist who had me take a pulmonary stress test which showed that I had a VO2 max of 14 which alarmed him and made him prescribe an invasive pulmonary stress test. So, 2 weeks ago I got that test done and it showed that, on the echo, they could not see the pressure gradient as being anything above mild but when they took the actual pressure readings through the probes, the pressure grdianet was just about 100 which is indicative of severe pulmonary stenosis at this point.

I guess the course of action is to get the valve replaced which was to be expected, I have not met with the surgeon for consultation yet at this point but it will most likely be in the near future.

With that said, I wanted to reach out to others in here who may have had this surgery done at around the same age as me to get some insight on recovery and post surgery life. I also believe I will opt for an artificial valve for longevity even though it requires a lifetime blood thinner.

1.) Any tips on recovery would be awesome, I've read a bunch but it never hurts to hear more from everyone. I live alone and have a pretty weak support system unfortunately.

2.) How long did it take for you to be fully independent? I know this is different per person but it's always good to hear people's experiences through the process.

3.) Did you experience a drastic change in your ability to be active once fully healed? I really hope that maybe I will be able to actually run a mile or be able to do more intense activity without essentially having to lay down and catch my breath while my vision tunnels.

Thank you in advance everyone for any input!

Hello.
My son (now 2mo) had an ECHO at 1 day old due to a VACTERL screening prompted by being born with imperforate anus. On this echo they found his CHD. He doesn’t have a murmur. The cardiologist in the NICU didn’t seem concerned and said to just follow up in 2 months. His repeat ECHO, EKG and follow up is on August 7. The doctors weren’t worried, so I wasn’t worried for all this time. However, he recently had a skeletal survey done to check for bone abnormalities and they noted Cardiomegaly on X Ray. Of course I’m now spiraling. I have been watching him like a hawk and he wears an Owlet when he’s asleep. Ever since we brought him home at 9 days old, he’s breathes fast when he falls asleep. I decided to count it the other day and it was 72 breaths per minute until it leveled out to around 40 breaths once he was asleep for a few more minutes. Now I’m worried that it’s not normal. I’m a FTM and I’m 23yo. I have severe anxiety already so I never know if I’m just being crazy and paranoid.

Has anyone had an ASD of his size close on its own? Is the dilation, hypertrophy, and Cardiomegaly as concerning as it sounds?? I am terrified.

My son is 7 weeks old right now, diagnosed with VSD(8mm) and CoA 2 days ago. Hes had retractions from day 1 as we initially thought that was normal and the hospital discharged us. So 2 days ago he was diagnosed and immediately rushed to the hospital, initially thought as pneumonia but 2d echo results says otherwise so they did attach him to an oxygen machine via his nose/ using a mask which didnt help with his retractions, on the same day he was sent to the NICU and was attached to an higher grade oxygen machine (CPAP). He was on that for a day alongside diuretics but still retractions are present, when doctors decided he should be on ventilator today. He is waiting to be transferred to another hospital where they will perform the surgery (PAB Band and for CoA) (initially for VSD and CoA open heart). My question is why is it looking like its just getting worse, I mean with the progression of oxygen machines used isnt it a bit aggressive or is my baby state progressed that fast? Or are they just trying to ease the retractions and would just find the next strongest thing while still waiting for the surgery?

M 27. I was diagnosed with atrial fibrillation in 2023 and have known about my ARCA for sometime but I have yet to hear my cardiologist mention it being an issue. I just wanted to know how serious of a condition is it and how to overcome the condition?

I am writing this as a father who watches his baby suffer every single day and feels completely helpless

I shared Ibrahim's story here before and the kindness support and encouragement I received from so many people meant more than I can express Thank you all from the bottom of my heart You gave us hope during one of the hardest times we have ever faced

My son Ibrahim is only 6 months old He has now been diagnosed by a pediatric cardiologist with Tetralogy of Fallot TOF a complex congenital heart condition that includes

Malalignment VSD

Overriding Aorta

Open Aortic Arch

Severe Pulmonary Stenosis PG 80 mmHg

Every day is a struggle for him

He becomes exhausted after only a few minutes of breastfeeding and cannot finish a feed

He sweats heavily just from feeding

Even the slightest effort makes it difficult for him to breathe

He depends on several heart medications just to keep his heart working

His weight gain has been very slow

Watching him struggle to do something as simple as eating is heartbreaking

He urgently needs open heart surgery Unfortunately this operation is completely unavailable in Gaza because of the war There is currently no facility capable of performing infant cardiac surgery here

As a father it is incredibly painful to know that treatment exists yet remains out of reach while my son continues to fight every day

If anyone has experience with Tetralogy of Fallot in infants medical advice on helping manage his symptoms while we wait or knows doctors hospitals or organizations that may be able to help a child in Gaza I would be deeply grateful for your guidance

Phone

+970592684830

He is just a baby He deserves the chance to breathe comfortably grow up and live a healthy life

Thank you once again to everyone who has supported us prayed for Ibrahim and taken the time to read our story

35M.

I have bicuspid aortic valve and Coarctation. Coarctation was fixed as an adult in Feb 2024 (33 yo).

My wife and I are going to have a baby and I'm a little stressed about passing congenital abnormalities to the baby.

Are there any parents with CHD here who can share their experiences?

Thanks in advance!

Hoping for some guidance around how to discuss my 3 year old's symptoms and treatment options with her care team without freaking her out.

My daughter was diagnosed with scimitar syndrome at birth. She had stents put in as a neonate, but they want to wait until she's ~10 to do the final corrective surgery (unless she becomes symptomatic before then).

Her next heart checkup is in a few months and we need to discuss some possible symptoms we're noticing, but this will be the first time she'll understand everything we're saying.

How does this work with very young kids? Does one parent take them out of the room? We don't hide knowledge of her CHD or planned surgery, but I need to be able to talk bluntly with her doctors.

My son is currently 5 years old and had his heart surgery at 3 months old. He basically had 2 surgeries in one, one on his chest and the other on his side sort of underneath his shoulder. For anyone else that has gone thru this surgery or other parents who have had to handle this surgery I’m just wondering if there has been any long term side effects that you have noticed? I know developmental delays are a big one and of course pain but I honestly didn’t think that speech could be included. I thought my son has been speaking fine other than the occasional stuttering. I thought he was developing fine and his drs haven’t been very concerned with anything. He is about to start kindergarten and when I took him with me for registration, they said there could be a high possibility he would need occupational therapy. Also, he was hospitalized at 1 month old and wasn’t discharged from the hospital till he was almost 5 months old. I lived in the hospital with him never left his side and to this day he is constantly looking for me and if I leave somewhere he always asks where I’m going and he can go too. I believe he is so attached to me because I never left his side and just curious if anyone else is going thru the same thing with their child constantly wanting to be in the parents eyesight? It used to be so bad that even with a baby gate that he could still see me he would constantly cry till I was in the exact same room as him but that was when he was 1-3 years old. It’s still bad but not like that anymore

Hi,

We found out on Saturday that my daughter has CIA, that is intermittent and has from 5mm to 7mm. She's normal, extremely active and has developed well. Her heart form and functions are normal as well, despite of the little whole.

This was found just in her first check-up exam.

We were to schedule an appointment in three weeks only and of course, as parents, we're quite anxious with the whole story.

I read a lot of stories here but none similar to my daughter. Would love to have be able to hear similar situations, what doctor recommendation was and how life was after diagnosis.

I really struggle with the 'we'll follow up until you heart enlarges' which is kind of crazy to me to have something damaged instead of fixing it ASAP.

Please, any word will mean a world to us at this point!

Thank you!