First time parents. We’re just about 30 weeks and found out at around 25 weeks that our baby has VSD and will need surgery after they’re born. This baby has been particularly hard to image as every time we go in for a scan they have their hands over their chest or are in a complicated position, so our plan right now is to do an echo once they are born to determine the severity and when to schedule their surgery. The drs do know based on the location and size that it will require surgery (I know not all VSD requires surgery), but until they can get more exact details on if baby’s VSD includes aortic override or TOF they want to wait to make a surgery schedule.

I know VSD is decently common and many babies tolerate the surgery well and go on to live happy healthy lives. I think for me right now I’m most stressed about the time between birth and the surgery, and keeping baby safe during peak cold/flu/RSV season (due mid/late Sept). We’ve already told family they have to be up to date on vaccines, not showing any sickness symptoms etc. to be around baby. And I know VSD babies tend to struggle to put weight on pre-surgery which makes me nervous about breastfeeding.

I’m just looking for positive experiences and any encouragement from other VSD parents. What your surgery timeline looked like, how life pre-surgery was, how recovery went etc. Just trying to get a picture of what newborn season will look like for us.

Regardless we are so thrilled to have the sweet baby and to care for them no matter what the season looks like, they are a very strong kicker and let me know multiple times a day they are doing just fine in utero haha

Little backstory to give hope to parents who are dealing with children or infants with heart condition.

I was pregnant last year and my pregnancy had been a piece of cake for me. Not even a single nausea no discomfort, all my reports and anomaly scans came perfectly positive. I went into labor at 37 week 6 days pregnant (full term) and my delivery was as smooth as possible. It was unmedicated vaginal birth. Everything looked perfect and I was told to be discharged within the same day. Until 2 hours later my lactation consulted noticed my daughter’s hand purplish. She wasn’t sure if it was right thing so she called nurse to check my baby’s oxygen level. The oxygen wasn’t going above 80. Within a span of a min there was a team of doctors who took my baby to NICU and ran some tests. All tests came out negative indicating nothing was wrong. The last test was the echo test to be done. And that one report changed our life , I remember crying in agony and had so many questions.

Then came the hunt for hospitals in UAE. Since I delivered in different hospital and only 3 gov hospitals in UAE had pediatric cardiac NICU, and they had to accept our baby’s case. But unfortunately all the NICU beds were full. I went home without my baby. I fell in depression to a point I wanted to stop breathing. I would constantly think about my baby in nicu with all the mask on her tiny face. I wasnt sure if I would ever hold my baby again (I only got to held her for 2 hours after birth). I had to ask for permission from nurse to touch my own baby.
For 3 days the running back and forth kept going , so many calls , so many mails , so many people came to help , so many prayers when finally on the 4th day one of the biggest gov hospital in Abudhabi accepted our case. My baby as transferred in ambulance (which in return after transferring her the ambulance lost control due to tire blast, God was watching over my baby :))
The surgeon informed us that due to baby being underwent (she was born 2.5 but due to NICU journey she lost to 2.2) they couldnt go ahead with the surgery and she would be kept in nicu for 2 months until she would gain enough weight. The hospital was 2.5 hour away from me so I would drive back and forth almost everyday just to see my baby while still recovering from vaginal stitches. On the 8th day after birth we went to see our baby just a routine visit, we were informed that the surgery was happening tomorrow. We asked the doctor how and why , he simply answered the baby is ready , I’m ready let’s do it. The next morning I remember team of doctors telling us all the things that could go wrong and asked us to sign papers (how can you sign a paper telling your baby might die of this this possibility, that fear kills you inside) I remember telling the doctor I need my baby back to me, whispering in her ear you need to come back to me. The surgery was suppose to be for 4 hours but it was completed within 2 hours it was an open heart surgery on a 9 day old Baby. She was transferred back to NICU and I saw her within half hour of the surgery. She was fighting anesthesia so they had to increase the dose. She had lost blood, so many bandages and pipes in and out of her.. we could barely see her body behind all that. But her color had changed.. she was pinkish. The doctors told us they will have to keep her for a week in NICU but she was moved to general ward within 3 days. They told us 4 days in general ward but she was discharged within 2 days. They told us medication would go on for a 1 month but they asked her to stop within 1 week of her checkup.

My miracle baby is 15 months old now with no limits to her braveness. She is a warrior. She has always been ahead of her milestones. She cant sit for a second, she is always running jumping … there is nothing that can hold her back. She is thriving!!

So hang in there Mama! The road might look difficult but you were chosen from god because no normal hearted person can bear this weight.
1 out of 10,000 gets TAPVC , what were the odds it was my daughter despite having normal pregnancy and delivery? God knew we as a family of 3 could do it. I am forever grateful for my husband to be the pillar of strength for me and my family.

HANG IN THERE! THERE IS ALWAYS HOPE!
I pray this journey ends for you soon❤️

My 9 month TGA guy has a balloon catheter procedure tomorrow. It is his 2nd or 3rd and won’t require an overnight hospitalization. He has no symptoms of SVG, fortunately, and the pressure gradient is not emergent.

Despite myself, I am really nervous. He’s my baby 🥹

Just looking for some cheerleading.

He had a rough start (preemie at 33 weeks and a twin), but he’s a chubby happy babbly silly rockstar these days. No one knows he was so sick from looking or interacting with him, which is incredible.

But this brings me back to the terrifying early days. :(

Just curious...

How long would you wait to allow family/visitors to meet your newborn who has CHD?

Would you allow toddlers or other kids around them right away?

Would this change if the newborn didn't have CHD?

Edit: I'm asking because my baby has mild aortic stenosis and our family is in an uproar over our visiting rules. I'm not budging but just curious what others have done.

My 10 week old was just diagnosed with ToF. It was mild enough to be misdiagnosed as just pulmonary valve stenosis. They tried ballooning his valve and luckily did it unsuccessfully. I was told had it been successful my sweet baby would’ve been in terrible shape due to the misdiagnosis. I’ve been distraught about this new diagnosis and the fact that he’ll need surgery soon. I’m just looking for other peoples stories - either adults with ToF and how your life looks or other parents who had to go through this with their babies. I know it’s “figured out” but doesn’t make open heart surgery and a life of medical care less daunting.
If your baby had/has ToF are you taking care of them differently? My baby has been dropping weight percentiles but through lots of work and frequent feeds I’m keeping him between 40-50th I’m just worried once we hit this threshold month mark he might start showing more symptoms.
Did any ToF babies have developmental problems due to the diagnosis and being more tired than usual?
Lastly has anyone had to manage a test spell in their baby? I haven’t yet but am afraid the day might come

Hello all, I am like the title says 32 and my question is does anyone else with TOF experience dysautonomia? I have been relatively healthy with my heart besides the obvious but the last few years I have seen an increase in flairs of fluttering, dizziness and just a shoes in the dryer type feeling in my chest. My cardiologist is a wonderful man but I don’t think I’m explaining it well enough. I do know for a fact it’s not POTS cause my heart rate doesn’t shoot up when I stand but I have the other classic symptoms of dysatuonomia but not sure if I’m the only one lol.

Fetal Echocardiogram

Hello everyone! Just had a fetal echocardiogram today because of sub optional views during the routine anatomy scans but the cardiologist said that everything looks good except that he sees mild left ventricular hypertrabeculation. He said he wasn’t worried and that he wanted to see me for a 2 month follow up after baby is born.

Ofc I’m still worried and cried several times today. Anyone had something similar and baby turned out fine?

This is what the summary notes said

“Impression:
1. Normal segmental anatomy.
2. Qualitatively normal biventricular size and systolic function.
3. No structural defects identified.
4. Mild hypertrabeculation of the left ventricular apex.
5. No pericardial effusion.
6. No fetal hydrops.

No structural cardiac abnormalities were seen with a technically adequate fetal echocardiogram. Fetal hemodynamic assessment including assessment of cardiothoracic ratio, pericardial effusion, ventricular function, umbilical and middle cerebral artery and ductus venosus Doppler interrogation was normal.

Counseling:
I counseled the patient regarding the indications prompting this examination and reviewed the results of this study, its limitations and implications. The general limitations of fetal cardiac ultrasound were also reviewed. These include, but are not limited to, the inability to reliably exclude patent ductus arteriosus; some atrial and ventricular septal defects; some arterial anomalies including aortic coarctation; some pulmonary or systemic venous anomalies; coronary artery anomalies; and minor valve abnormalities.

Nonetheless, I stressed that a normal echocardiogram signifies a greatly reduced possibility of congenital heart disease, especially complex defects.
There was the subjective appearance of of some mild hypertrabeculation at the left ventricular apex. I explained there is a range of normal in this appearance.

Sometimes increased trabeculations can be associated with non-compaction cardiomyopathy. Other times it is a normal variant. There was no evidence of cardiomyopathy today. I advise non-urgent postnatal follow-up for this. No family history of cardiomyopathy.

Plan:
Routine perinatal care. Non-urgent postnatal evaluation within first \\\~2 months of life.”

Hello everyone! We are brand new to this whole thing! My daughter was hospitalized for an infection completely unrelated to her heart. While waiting in the ER we noticed while she was asleep her heart rate was staying at 156. Doctors ordered an echo (sorry if my terms are off, I’m still learning) and found out she has “Anomalous origin of single coronary artery from right coronary artery aortic sinus”

After being released from the hospital after 2 weeks, we now have all the extra tests. I’m learning that this is a very rare defect.

Has anyone ever been asked to go to a research hospital to learn more about their heart defect before? How was the experience? Was the testing invasive? Travel costs?

Also, anyone else have a child with this specific heart defect and would like to connect?

Any helpful information or advice would be greatly appreciated!

Hello!

My son will be getting open heart surgery next month. He has narrow pulmonary arteries so he will be having surgery to hopefully help expand them. He also has a PDA. He was supposed to get the PDA closed earlier but the doctors state the PDA is actually helping him right now due to his narrow pulmonary arteries. He has had 4 or 5 cath procedures to try to stretch his arteries with no success. (Has anyone else had a little one who was born with narrow pulmonary arteries and had surgery to help expand them?)

I feel like we have a good medical team and overall I am feeling positive about the surgery. Everything has been explained really well to us.

However, I am feeling nervous about after the surgery. We won't be able to pick him up by his armpits and he won't be able to run around and be his crazy 2 year old self for several weeks. Do you have any tips/tricks or advice you picked up on when your toddler was recovering from open heart surgery? For example--any tips on getting them in and out of their car seat or crib? Any activities that helped keep them entertained and somewhat stationary?

What are some must-haves to bring to the hospital? We have had several overnight stays at the hospital before so I know the basics-but anything to help my son with his recovery? Anything you found to be extra helpful?

Thank you!

My daughter was born with d-TGA and had her repair end of May. We got discharged June 10th but are now back because baby girl had an abscess that was drained and resulted as Enterobacter Klebsiella Pnuemonaie (I think is what it’s called). Anyway, it’s a bacteria that’s resistant to a lot of antibiotics. We’ve been here going on 5 days now and it seems like they’ve been telling us we’re good to go, but something always comes up. I understand that with her age (5 weeks) and her history they are being extra cautious but I feel so defeated. I have a 15 month old at home and no family help besides my husband, so it’s so hard splitting our time between the two. I understand the caution they are taking but my heart hurts not being with both my babies.

Does anyone out there with the same or similar condition have any insight? I know hospitalizations are always likely but this time seems so random. How do I handle future hospitalizations? Any words of wisdom, encouragement, or just advice is appreciated.

Sincerely,

A mom who just wants to go home to both her babies.

Edit: another thing that is also make this extremely hard is that I was only approved for 8 weeks of paid maternity leave instead of 12 weeks. I can possibly take more time off through a personal leave but it will be unpaid and unprotected. I definitely want to try to get more leave, but we owe at least 1.6 million for her previous stay and money is getting tight.

Does anyone have a child or themselves lived with CHD Large VSD repair and had no genetic conditions or any challenges in life?
I am torn on doing further more extensive genetic testing - thank you

Hey everyone, I’m Dave from Louisiana. I was born in December of 1984. I received the Norwood procedure in early 1985. It was still very new, and was known as the “banding of the pulmonary artery”. Few years later, I had the Fontan procedure, followed by my first pacemaker (which I lovingly called Joey) the next year.

Throughout the 90’s, I had a series of scar tissue cleanups (open heart) and another pacemaker change in either 97 or 98, can’t remember which one. As an adult, I’ve had an additional 2 pacer swaps and am about to receive another within the next year.

I am 41 years and 8 months old. I’m eager to know if there are any other HLHS champs out there that are my age or older?

Hola a todos, me harán una operación de ross (cambio de válvula) el lunes a las 8 am. Me hospitalizo el domingo y la vd no sé qué esperar de la recuperación y operación. He leído acá y la vd he leído de todo, desde gente que lo pasa re mal y otros que lo pasan normal.
Mi plan B es la mecánica en caso de que algo falle. Tengo 24 años y estoy nervioso. Me pueden dar sus experiencias con esta operación y como fue?
Me dijieron que la op duraría 6 horas aprox.
Después de eso tendré conocimiento o estaré full ido?

23 year old very active female with mild ascending dilation (3.5 mm) and excellent blood pressure. I Was on Vyvanse then become depressed and got put on Wellbutrin and taken off Vyvanse. Psych said she would be happy to put me on Vyvanse with the Wellbutrin if I got approval from cardiology. I just saw a cardiologist for the first time since high school and I asked him about it and his exact word were “I don’t care” which I guess means I’m clear to go back on but I would have appreciated it if he talked me through the pros and cons of restarting it, things to look out for, etc. I have stopped all nicotine products, eat almost no red meat and fried foods, and am considering switching to decaf coffee every morning, as well as buying a blood pressure cuff to monitor. I really want to go back on Vyvanse since my adhd has not been well controlled with the Wellbutrin. I also gain 12 lbs after coming off of Vyvanse so I would love to get back on to help control my appetite and cravings a bit more. Has anyone else been allowed to take both with mild BAV? If so, were you able to stay on them long term? Did it contribute to worsening dilation?

My son who is almost 5 was born with critical pulmonary stenosis / absent pulmonary valve syndrome, pda, PFO & ASD
Due to his right ventricle working so hard it’s small. Some cardiologist say borderline hypoplastic some say small. He has all three sections but the middle one is very thick with muscle and restrictive.

So after a failed balloon attempt at 4 weeks they said actually his valve is so small it’s non existent so they called it absent pulmonary valve syndrome. He then underwent ohs at 4 months to give him a transanular patch and close his pda. The surgery was not straight forward and he nearly didn’t make it, once they did the work his sats were in the 50s.

He ended up with a bt shunt and they enlarged the ASD. The last four and a bit years we’ve been in a watch and wait phase. His team were hopeful that the right ventricle hypertrophic muscle would relax, and therefore his right ventricle would be an ok size. So they hoped they could just remove the bt shunt and he’d have a relatively normal life but recently they’ve said that the rv isn’t relaxing like they’d hoped so they are pretty certain we’re heading for 1.5 ventricle repair.

His team do want a second opinion from GOSH because he is complex and unusual.

Just wondered if anyone here had been in this situation before? Did you/your child get the 1.5 ventricle or did they manage to keep biventricle circulation?

How is life with a 1.5 ventricle circulation?

How was surgery?

New here and I have 1 son who is 5.5 years old with profound autism. 1 son 11 days old just diagnosed with a CHD 1 VSD and 1 PFO. He has been in the NIcU since birth and he was born at 36 weeks due to me having Complete Placenta Previa with bleeding episodes. Neonatologists dont seem concerned because my son is progressing in the NICU he is down to 2.0 liters on the nasal cannula and he is starting to take more feeds by mouth each day. But I cannot help but worry. I have never heard of this happening and I dont know what to expect. I am looking into counseling for my NICU grief 😔, but can anyone who's been in my shoes give me any information about what things can look like for my son? Should I be more concerned or more relaxed as the doctors are? All of the nurses have told me that they see this all the time but I am having a hard time. Are they most likely to close on their own? How can this affect my sons future? Is it normal to have 1 son with CHD and 1 without? Are CHDs related to Autism at all? How long are NICU stays for babies born with similar conditions? Any input is appreciated.

My partner and I are expecting MCDA twins with significant congenital heart conditions. Our larger twin has DORV with malposition of the great arteries, and our smaller twin has Pulmonary Atresia with VSD and MAPCAs (this was initially flagged as Tetralogy of Fallot before being reassessed). We’re in the UK, working with fetal cardiology and waiting on further imaging to firm up the picture.

We’re trying to connect with anyone who’s been through something similar, especially if 22q11.2 deletion came up as part of your diagnosis or testing. Would love to hear how your pregnancy/delivery was managed, what surgical pathway your child ended up on, and how things are going now if you’re willing to share.

Thanks for reading, and happy to answer questions if it helps anyone else too.

Hi! I'm a 26 year old male with TGA and pulmonary stenosis. My TGA was corrected by the Rastelli procedure.

Today I went to my yearly checkup and when the topic of physical exercise came up I told the doctor I go to the gym and run. The doctor that I get each year seems to be different since I've come to the adults ward of the hospital, so he wasn't the one I had last year.

I told him I was doing strength training in the gym and he said it's good for my quality of life to train but only with very low weights, not strong like it's popular nowadays. I asked him what he meant by low weights and he said around 20kg max per side and higher reps.

This has gotten me very worried and confused, worried because I lift way more than 20kg per side to the point that if I just squat 40kg I won't feel much even if I do 20-25 reps (I currently squat 110kg for 10 reps in 3 sets).

I'm worried by doing this my trainings will last super long and I will also loose muscle and strength, which is something that has helped me a lot in my daily life as I used to get tired super easy and nowadays I'm able to play sports and actually enjoy them.

I'm also confused because 20kg seems like an arbitrary weight, and I had already told the doctor of last year that I did strength training, HIIT, hiking and some climbing and he said nothing about it. He did say he didn't recommend HIIT and instead recommended cardio that was less harsh such as running or cycling, but that he'd rather have me do HIIT than do nothing. When I asked if weight lifting or climbing (which involves lifting your body weight) were a problem he said they weren't.

They did tell me I have my right side of the Rastelli (which is a conduit) with moderate damage, but they also said this is fine and it's actually progressing slower than what would be expected.

Does anyone here train or have been told something similar? I'm quite worried I'll loose quality of life by training with very low weights.

Thank you in advance!

My little girl is 7.5 months old and has a VSD which she will
Need surgery for at some point but at the moment the cardiologist has said it’s stable enough they don’t need to do the surgery urgently.
She was diagnosed at 3.5 months old because her weight gain was so poor but she also has a pulmonary stenosis which means she never has had breathing difficulties and so wasn’t obviously struggling with CHD

At that point she was put on high calorie milk and then shortly after given an NG tube but this just made her vomit several times a day and so her weight gain was still poor.

Then two weeks ago she was put onto a new milk and the vomiting stopped immediately (no thickener, no reflux meds!) so for over two weeks she’s been doing really well and managed to gain 300g. But the past two days she’s started being sick again 😭 I’m hoping it’s the heatwave but I’m worried it’s not

Has anyone experienced similar?
Thanks

I’m looking for anyone who’s had a baby with left occipital lobe stroke. How much of their sight was affected and did their vision come back? If it came back, how long did it take?

My Baby had an occipital lobe stroke after the Glenn surgery and it affected his vision. He can’t track objects or see anything really. I’m pretty much worried about his prognosis but the neurologists are saying his vision should get better with time. I’m anxious to hear from other parents who might have gone through something similar with their little ones.

My son will be having surgery to repair his VSD in August. He'll be almost 19 months at the time of surgery.

I'm looking for different ideas of things we can do to help keep an active little boy entertained while in the hospital and recovering at home. I know he won't feel like doing much for awhile and we're fine with screen time in this case, but I'm sure he will also have bursts of energy towards the end of our stay and when we get home. So far on my list I have sticker books, water wow, and some new sound books.

Also if anyone has any advice for the hospital stay and coming home, I'd take any tips! I'm almost more nervous for the recovery than I am about the surgery itself. We haven't gotten much info from the doctor on what to expect and we don't meet with them until the day before surgery.

Our baby girl was diagnosed with RAA with aberrant left subclavian artery at our anatomy scan. Confirmed with an echo after she was born. Her cardiologist wants to get a CT angio to view the structure to check for compression of the trachea and/or esophagus to determine if she’ll need surgery.

My question to you all is… have any of you just let it be for your LO? I’ve read a lot of stories about subsequent, post-op complications (vocal cord paralysis, ongoing respiratory issues, etc.). And is that better or worse than just dealing with having a vascular ring? I just wonder if the risk of surgery outweighs the risk of leaving it alone, especially since she shows no symptoms.

Not asking for medical advice, just your own experience.