Hi all! I’m 35F with BAV, in 2020 had OHS to repair an Ascending Aortic Aneurysm via Bentall Procedure (valve sparing).

While pregnant in 2022, my wires started causing a lot of pain and it continued post pregnancy. While X-rays show that the wires are not broken, my surgeon said because my valve is expected to last a number of years and I won’t be having another OHS for a long time (of course not guaranteed but based on testing that’s his estimation) he doesn’t want me living in pain when the goal was to get my quality of life back.

If anyone has questions about the process I can come back after and explain

I’m in Canada for location reference

Hey all. Is there a place where we can look at surgical outcomes for specific surgical programs or specific surgeons?

I know publicly reported data exists I just don’t know where it is.

What this is:

the co•op @ HeartWorks is a data cooperative between the research platform at HeartWorks and members of the CHD community. You, as a member of the co-op, can seamlessly donate your medical journey data to help beat CHD.  

Purpose: 

Your data, together with others, will give researchers a more complete picture of CHD and might uncover previously unknown features of this disease. Additionally, these data will inform future clinical innovation and design of clinical trials which address the needs of the CHD community. The knowledge generated from this data cooperative will help advance the care of CHD patients. 

Member’s benefit: 

Membership in the co•op @ HeartWorks provides a rich set of electronic tools you can utilize for management of your own care through aggregation of your medical data. These tools include symptom tracking, medication notifications, journaling, and benchmarking of health information within the CHD community. 

Member’s voice: 

Unlike a traditional research study, the members of the co•op @ HeartWorks can, should you choose, actively inform, and contribute to the future studies affecting your health. the co•op @ HeartWorks enables and encourages you to offer your thoughts and ideas for better care and research topics.  

To learn more and become a member, visit us at the co•op @ HeartWorks!

During the regular checkups of my boy during his 4th week, the doctor heard some murmur in his heart. We were promptly sent to Children's Cardiolosgist. She confirmed that there is a 3-4mm "hole" between the ventricles and I believe she meant the membranous side of the ventricles when she pointed out in an image. She said she can see some tissue near the hole and that we have to wait and watch if the hole spontaneously closes itself. We have our next appointment in 3 weeks. She also said that there is another hole in the upper chambers and that it is not concerning at all and is normal in many babies. This was quite unexpected and I am unable to stop worrying about it.

I would be very thankful to hear some experiences from fellow parents who have undergone something similar. The doctor said at this point he doesn't see any symptoms and asked as to watch out for fast breathing, sweating, and poor feeding. The problem with these parameters are that they are very vague for babies. Babies generally breathe faster and sometimes he does this very fast breathing for few moments and then it is no longer than. Same with feeding, there are times when he sleeps during his feeding and times when he is very active and cranky during the feedings as well as times when it is perfectly alright. I am lost on how to make a distinction on what is and what is not normal as these behaviours are present in almost all the babies.

What are the other things you need to take care or watch out for? He is exclusively breastfed for now

How are you doing?

Hi,

I know I’m reaching for straw here but I really need help. A very quick back story on my pregnancy and childbearing journey (I will keep short).

In 2022, I gave birth to my son Grayson, at full term, who died the next day. He had a catastrophic brain bleed and they have no idea how it happened (I had a c section). His case has been taken to a conference in Ottawa (I’m in Canada) and no one has seen what happen to him before. Spring 2023, I get pregnant again. September 2023 we find out the baby has VSD and IAA in his heart. We decided to terminate.

Now here I am, 17 weeks pregnant and a few days out from an echocardiogram and our meeting with the geneticist regarding the heart issues with the last baby. They inform us that he had Di George syndrome and the whole TBX1 gene was deleted (1.4 Mb). She told us it’s 90% chance that this is not inherited from my husband or I (we have zero symptoms of a deletion or Di George Syndrome). However, I’ve been researching the last few days and I have found a few papers that suggest that because our deletion was atypical (the typical deletion is 3 Mb) that it’s a much higher chance that it is hereditary. I would also like to add that our son , Grayson, did NOT have this deletion. I have asked for a phone call with the geneticist, but am waiting to hear back. If there is anyone on here who can speak to this, it would be greatly appreciated.

Thank you for taking the time to read my post.

When I asked my cardiologist about heart failure a while ago, it felt like I couldn’t get a straight answer. Was I in heart failure? How do you diagnose it? When I did some research online, I couldn't find much about heart failure specifically for CHD patients. So, being a journalist, I set out to report and write it myself. Here is the guide, with info on symptoms, diagnosis, treatment, mental health and additional resources.

https://theheartdialogues.substack.com/p/congenital-heart-disease-heart-failure

If you’re interested in more like this or want to support my work, sign up for The Heart Dialogues, my free newsletter about life with CHD. Thanks!

My baby boy- almost 8 months old had his norwood when he was 15 days old He did great, typical recovery for HLHS Then out of nowhere he got Klebsiella infection lead his platelets to be 1^3 instead of 150^3 To be ended to have 3 brain bleeding spots

He spent 90 days in ICU SINCE his birth At home , he was developing his skills whiche is for sure delayed compared to other babies but he was catching his milestone

Untill he couldn't catch the toys, he trying but no no

& some irritating time for continuous crying- his ped explanation is hard silent reflux-which is true at sometimes

After MRI & EEG

The summary is attached

Now i have 2 questions

We are waiting for glenn

1- to which level this is bad? How could this effect on his life? He will be able to walk, talk, & do some normal kids stuff?

2- what is meant by CP? He will be a man with a kid's brain?

I'm very worried about all of this I didn't get over the HLHS point till now to have this also

He is on keppra now ( he has that side eye so dr mentioned this is a form of seizures) & Nitrazepam/Megadon

I just had a chest ct and they found PAVPR. I have a left to right shunt. I am 30(F) and my anxiety make me super terrified and my mind thinks the worst. Can someone give me a little info about it? Medical care where I live is crappy. I have not even seen my PCP for a referral because all these appointment times are ridiculously long. Will I have to get surgery? Does everyone with this have Pulmonary Hypertension? I am a mother of 6 am so worried about dying on the table or having a poor outcome somewhere. Whether it be surgery recovery or afterwards. Everything I find google researching on my own is downright terrifying.

I’m 19m and have pretty much always been low on energy. I’ve tried fixing my diet, I sleep 7-10 hours every night and go to the gym 5-6 days a week. But I’ve never been able to find anything that can fix my issue. It’s to the point where I am yawning constantly and feel like if I laid down at anytime of the day and fall asleep for hours. Anyone that’s an older teen or adult here that could know if this is related to me having HLHS and if so if there is anyway to deal with it

After our daughter’s recent surgery the number of meds has doubled.

We have a system of keeping track of what’s been given but it’s taking up a lot of counter space and I feel like there has to be a better way. Also looking for a better way to send her meds in pre-filled syringes to daycare.

Please share your guys ideas and products yall use.

Did anyone or their child have HLHS with normal aortic root and double outlet right ventricle?

I'm 28 weeks pregnant. We were just told last week that our daughter has mitral valve atresia (couldn't locate mitral valve), under developed left ventricle (barely visible), but her aortic root looked great. Anyone experienced this? How did everything go? The cardiologist mentioned the three-step procedure for Fontan and we're seeing specialists in DC later this month.

I'm just so worried about it all and feeling lost.

(Completed, no longer needed. Thank you to those that participated.)

Hello, I am currently working on an advocacy project for college. I would love to speak with someone privately who has CHD and would like to answer 5-6 questions about it. Thank you for taking the time to read this, I hope to hear from someone soon!

hey guys, I came on here last week to vent about how difficult it is to keep pushing forward, and some of you have been asking for updates so here we go:

the day after I wrote that I had to call an ambulance because my chest pain had gotten unbearable and I was gasping for air. the next day they took me in for an exploratory procedure and the results were in congestive heart failure. That is still a diagnosis I am trying to comprehend, but I know that I am in one of the best hospitals in the country with some of the best surgeons and cardiologists, so that helps ease my mind. as of today, I will most likely be discharged and doing the treatments as an out-patient until we figure out what works.

A lot of you commented about my girlfriend and making sure she was aware of it all and taking as much pressure off of her as possible and that's exactly what I have been doing, but she has chosen to drive the hour each way Friday, Saturday and Sunday to see me, she even brought me non-hospital food, blankets, snacks, drinks and her switch for us to play together. I kept checking in making sure she was okay and that she knew that 1. I am so thankful for her and 2. that it's okay if she has her own life and she doesn't have to do all of this, she can go spend time with friends etc. She has continuously reassured me that she knows and she wants to do this. So now I'm planning on spoiling her next weekend and taking her on a nice date, flowers and everything.

So yeah that's all the updates I have for now, thank you, guys, for all of the kind words.

Hi everyone. This is my third baby - my second daughter has ToF w/PA. Had a full repair at birth and now is A-OK. We do yearly checkups to make sure she’s good and she coming on two years doing strong (thank God)

We did all the genetic testing at birth and she’s good. No issues.

Fast forward to now. I was sent to do an echo “as a precaution” and what are the odds. I already know. 3-5%. Well here we go again lol.

No ToF but this baby has a large VSD. They said 2 weeks after birth they assess and see if it closed or got smaller on its own, but if it doesn’t it may need OHS or a procedure to repair. Another baby with OHS. I don’t even know where to begin.

My question here is : has anyone else experienced VSD? Did it resolve itself? Did you need OHS?

Everything else with the heart seems fine. THANK GOD. No other issues. Where the hole is doesn’t interfere with any part of the heart or its functioning. I know for CHD this is small. But not to me. Still seems like a very big deal.

Thank you for your responses. Much appreciated,

One stressed out mama.

Hi, I (f20) was born with ToF and a mysterious other issue. I have had 6 heart surgeries so far, with 5 of them being open heart. I have a porcine tricuspid valve and some sort of aortic valve repair (idk I was too young when I had the surgery to know). Just this past November I had an ablation and since then everything has been going fine until in the last week or two my condition has rapidly declined. I struggle to have a basic conversation without needing a breathing break and the doctors said I should prepare myself for heart surgery seven within the next few months.

All of this to say, I am a college student who's almost halfway done with my undergrad and I just got this amazing opportunity to work full-time over the summer at a place that can launch my career in the mental health field, but realistically I may not be well enough to do it. It's so hard because this is what I've wanted to do now for nearly ten years and now that I finally have the chance, my health is once again holding me back.

I do have a job shadow at the place this Saturday and I'm going to play it by ear, but with the impending surgery looming over my head it is so hard to stay optimistic and motivated towards anything; especially knowing that by the end of 2024 I would have had to relearn to walk and take basic care of myself again. It is so frustrating because I do not have any family support, other than my father who lives halfway across the country and my girlfriend (we became official four days ago, and matched in mid-March of this year). For me to have stable housing where I am I would simultaneously have to be a full-time student which adds a whole layer of pressure.

Usually, I'm very good with pushing through and just venting in therapy but with everything piling on and the threat of me not being alive it is just so hard to stay motivated and optimistic. I guess I just needed to vent, and if you read this far, thank you.

Hello. I'm 22weeks and at 20 weeks we were told baby bad hydrops.
Fast forward to today and we have got a diagnosis from a cardiologist that baby at present has an ASD but everything looks good to repair ar age 3 approx if all things are still tracking well.
Babys hydrops has been confirmed to be from a parvo-b19 infection.
Dr's said it's a very "unlucky roll of the dice" to have both of these things at once.
Anyone else been in a similar situation?
I'm more optimistic now with more information but I'm still so so anxious about this all...

Not sure if this is the correct group for this. My wife recently had an ultrasound and this was written on the report after the fact. Can anyone help dumb this down and explain what this means while we wait on the referral to the children’s hospital? The ultrasound tech couldn’t really explain her findings as she is not certified to make a diagnosis. I’ve tried to do look into it and it seems to be TGA. Kind of freaking out. Any insight would be appreciated.

My younger child (6) has several cardiac defects; one is PAPVR and he needs the Warden procedure this summer.

He has an age appropriate understanding of his anatomy but CHD has never affected his life in any meaningful way (no restrictions, no meds). His older sister (repaired TAPVR and VSDs) gets echoes with him so basically he thinks CHD is normal and no big deal.

He is empathetic and emotional. He doesn’t have autism or ADHD, he’s just a sensitive kid who worries. He benefits from gentle parenting and thorough prep for new experiences.

I am worried about how to help him emotionally manage his surgery and hospitalization, the prep for it, the recovery restrictions, everything. I’m feeling an incredible amount of pressure to do this right to prevent him from being traumatized. He will remember how we handle this, unlike my daughter who was good with breastmilk and skin contact post-op.

My SIL is a child life specialist (at a different hospital) and recommended not telling him about the surgery until a few weeks before. We don’t have a date yet but are expecting late June. I agree with her that we shouldn’t tell him now - he will spend the rest of the school year freaking out. But he needs a little more imaging and another cardiology appointment plus a surgical appointment in the next month. I don’t want to lie to him about why we are doing these things either. We will obviously involve child life as much as we can.

TLDR: how do you tell a kid they have to go through something like this? How do I help him manage fear so he’s not (emotionally) scarred for life? If you have CHD what did you find the scariest and how should a parent handle it?

Hi all 28f.

Anyone had an ASD repaired? I recently had ASD repair via OHS 60 days ago and I realised my body temperatures changing.

My feet and fingers used to be cold all the time and now it is gone which I am happy about and second thing I noticed is that I do not have anymore nausea and most importantly NO MORE feeling like water gushing out through the an open gate on my chest/heart the moment I wakeup every morning. But I do randomnly sleep feeling cold (with this new feeling: warm hands and feet) and waking up with randomn night sweats and currently my chest is feeling super tired(even breathing is exhausting) after little exertion which is most likely due to my surgical infection(pseudomonas) on my top scab.

But I am still super duper glad I accidentally found out my ASD issue and I did the surgery!!! Any ASD repaired with similar changes?

Next post will be on my experience after OHS.

I am 36 weeks pregnant and I had a doctor appointment with my MFM Dr yesterday where they did a measurement test on the baby. When they were measuring his heart they spent extra time on it, which I thought was a little out of the ordinary. When the doctor came in to talk to me about the ultrasound he told me that he suspects that my baby might have a heart defect and he's referring us to Valley children's to see a pediatric cardiologist so that a plan can be established for the baby in case he needs surgery once he's born. The condition is called Aortic Coarctation.

Have any of you moms had your Dr suspect the condition but it turned out your baby didn't have it afterall? . Have any moms had a baby born with this condition? If yes, what was your experience like after the baby was born did your baby need surgery? And where did you give birth?

Hello, at our 20 week anatomy scan our baby was suspected to have HLHS. Upon further evaluation from a cardiologist she said baby’s LV works and functions just fine & the only thing they can notice is that it’s slightly smaller than the right. It’s long and skinnier in comparison to the right ventricle. The mitral valve also appears to be slightly smaller than it should be but is working just fine.

Anyone else experience this? Is it possible for the LV to grow? We go back for a repeat echo in 5 weeks to let baby grow (she’s really small). Every other structure in the heart looks great.

Hey, to anyone who has a CHD or an older kid who has shared their thoughts on the subject, would it be cringy or weird to our daughter (1y) in the future if my husband got a tattoo of her condition? He's been wanting a tattoo for a while, and settled on an a TGA heart surrounded by roses. While the tattoo itself sounds badass, I would hate for it to upset her down the road. Feels like it might be a little on the nose and awkward for her.

I suggested maybe waiting until she's older, and she can agree to and be excited about him getting the tattoo.

My daughter has been diagnosed with Interrupted Aortic Arch (IAA) Type A, Truncus Arteriosus (TA) Type A, a large VSD, a common arterial trunk overriding the VSD, and a bicuspid truncal valve. She is 20 days old, and when we went to AIIMS (All India Institute of Medical Science), the surgeon told me that there is only a 5% chance of successful surgery, so they suggested leaving it to God. What should i do now?

Hi, my 4 month baby had his open heart surgery on 4th March, Monday. His ICU stay was extended due to post surgery infection and fever. Was on vent for 2 days, NIV and sedatives on 2 more days. Today when he’s off NIV, I fed him a couple of times but I don’t think he’s recognising me at all. I’m very scared. Can you guys share any experiences? Can this happen 5th day after GA and surgery. 12 hours since sedatives have been stopped but still not recognising me. Thanks

I recently had my coarctation of my aorta repaired, only to be told after the surgery I was being rediagnosed with interrupted aortic arch, as my aorta was completely closed my entire life. This surgery happened 9 days before my 20th birthday and from everything I’ve read, it’s amazing I made it there. I am really struggling to research this, as it seems to be incredibly rare and I’m just wondering and looking for someone who has gone through something similar, or knows someone who has had this surgery. Thanks!

3 month old diagnosed yesterday with Pulmonary Branch Stenosis but no other chds.

The doctor didn't give us any leaflets etc as everything he had related to Williams Syndrome and he didn't think from looking at our son that he likely had this - although I'm going to ask for genetic tests at our next appointment to confirm this.

I have googled and find groups for pulmonary vein or valve stenosis but not seeing much where it is confined to just the branch?

I also googled Williams syndrome and think my son has some of the features, with an upturned nose/low bridge, and folds on the inner bit of his eyes.

Has anyone experienced just the branch stenosis with no other issues?

Hi all, our baby was diagnosed in utero with tricuspid atresia along with a missing PDA. We’ve done countless hours of research, met with pediatric cardiologists, sifted through Reddit and the Facebook groups but now I want to reach out directly before meeting with the surgeon tomorrow who would be doing the surgeries (BT shunt, Glenn, and Fontan)

Our main goal is to make sure he has good quality of life and we are trying to reconcile that while essentially guaranteeing he will have liver and heart failure in his future in the best case scenario.

People with similar diagnosis, would you choose to go through it again if you had the choice? The FB support groups seem to only be success stories and I’m trying to get a realistic view of what the future could hold.

We are fortunate to have the resources (financial, support network, and work flexibility) to care for him and good access to great hospitals (children’s of MN/mayo) if that’s the route we choose. This is our first child.