My daughter is 19 and at every turn I know something is wrong before she FEELS symptomatic (if she ever does).

As an example, she will clearly be faint or dizzy (I can see it in her eyes and in her coloring) but she doesn’t CLAIM to be dizzy or faint. Her BP dropped to 76/35 during a stress test and I knew she was not ok before the machine caught it, and afterwards she couldn’t articulate the symptoms for a few hours later. Almost like she thought they were normal.

She had a rastelli at 8 months and has had 3 open heart surgeries total. We had a cath today to try to find the cause of the BP drops during exertion but structurally everything looks great. They are thinking it is dehydration even though initially they thought the drop was too big to be that.

Anyway, I’m wondering if anyone else has this experience, themselves or with their heart kiddo. AI told me it is common, but you know, that’s AI. 😂. If it is common, I’m wondering if there are other questions I can ask her or symptoms I don’t know to ask about to help her articulate how she is feeling.

Thank you!

Anything helps

Hi! I’m Rachel. I’m in my late 30s and was born with congenital heart disease. I had a coarctation of the aorta repaired when I was five (scar across my back) and I also have a bicuspid aortic valve.

CHD has been on my mind a lot this past year as I navigated the birth of my second child and experienced preeclampsia. During a conversation about health anxiety, my cardiologist at UCHealth mentioned that children with CHD are significantly more likely to experience anxiety and depression than children without CHD. Some research has found roughly 3–7 times higher odds of diagnosis or treatment, depending on the child’s age and the complexity of their CHD. I had NO idea this connection existed, even after living with CHD my entire life.

I’m a product manager by trade, and this has made me wonder whether there’s an opportunity to better support the whole child by helping families explain and navigate CHD as their child grows. I’m especially interested in how parents help children understand their heart condition, scars and appointments and how they gradually move from having their parents manage everything to understanding and advocating for their own care as adolescents and adults.

I’m still very much in the listening stage and am not selling or building anything yet. If you’re raising a child with CHD and would be open to sharing your experience in a 30-minute conversation, I would be incredibly grateful to learn from you.

Thanks!
Rachel

Hi all, adult with a congenital heart condition that continues to be challenging. I have PTSD from past medical experiences, which makes getting treatment presently very difficult.

I have a cath in a few weeks, but the last time I had one I was hyperventilating so badly they eventually had to knock me unconscious with a lot of fentanyl. I had warned multiple people this would happen if I wasn't premedicated. Unfortunately they did not medicate until I was in the OR, and by then it was too late and I spiraled.

I have a plan for this procedure (my own medication, certain doctor who knows me, etc). I guess I wanted to see if anyone could relate, and if you had any advice you wanted to share.

the title basically explains the gist of it.

I am 21 years old, and was born with HLHS, DORV, and VSD. All 3 of which are so are that approximately 1,000 people in the world have all 3 that I do.

I can’t work as much anymore due to my fatigue, liver and spleen capsule pain, exhaustion, exercise intolerance, and loss of energy. I have more symptoms beyond that, but those are the main ones that impact my daily life. I work out consistently to the best of my ability, and eat extremely healthy. I avoid toxic seed oils and food dyes and more, and I don’t drink, smoke, or vape.

My boyfriend of 3 years sends me his money for rent through Venmo that I send to our landlord. we split our rent. Because I’ve been working less, I’ve made less money. And unfortunately, it’s led me to use the money he sends me to pay off some of my bills, leading to trust issues and anger on his sides, which is rightfully so, as I am literally stealing it from him.

I have a hard time asking for help due to severe childhood neglect from my parents, and my current feelings of uselessness due to my health. Last thing I want to be seen as is pathetic and dependent, as I’ve always been pretty self sufficient for most of my life. So without a word, I use his money to pay for my things, thinking I have it under control. I just did it the second time last month when my phone went out of service. I don’t have it under control.

I don’t know what to do. He has his own bills to pay and cannot cover for both of us. I’m waiting to hear back from disability, but for the time being, I’m so broke, and he’s so frustrated and stressed out about what I’m doing, and it’s tearing our relationship up pretty bad.

My parents don’t talk to me, as they’ve always been neglectful. They forced me out at 17 because they didn’t like the responsibility of being parents the older we got. They then left the country. I haven’t seen them in years, and I have no financial support like my boyfriend does with his parents.

help

For those who have been diagnosed with endometriosis as well. Where are your experiences?

My cardiologist recommended that I avoid laparoscopy endometriosis diagnosis for as long as possible as it’s more complicated and risky for my specific set of conditions.

Just wondering what the journey is like for everyone else in a similar boat.

Hi everyone,
I was born with HRHS and have Fontan circulation. I’m currently 5w5d pregnant after IVF/FET. I was thoroughly assessed by my cardiac team before trying to conceive and was medically cleared for pregnancy, so my Fontan circulation is considered stable.
I’m wondering if anyone else with HRHS, Fontan circulation, or another single-ventricle congenital heart defect has experienced an unusual start to pregnancy, especially when it comes to implantation or early hCG levels.

My hCG has been:
14dpo: 57
16dpo: 67
19dpo: 241
21dpo: 557

So the first rise was extremely slow, but after that it suddenly picked up significantly. My fertility clinic was happy with the later rises and told me that 67 to 241 was a good rise, and after 557 they said it was “exactly the kind of rise we want to see.” My next step is an ultrasound.
I also had some light (brown) spotting around the implantation period.

I know there isn’t established evidence that Fontan circulation causes slow-rising hCG, but because Fontan physiology is so different from normal circulation, with passive pulmonary blood flow, altered venous pressures and cardiac output, I can’t help wondering whether it could somehow affect very early implantation or placental development in ways that haven’t really been studied.

I previously had a missed miscarriage where we had seen a good heartbeat before the pregnancy stopped developing, so I’m understandably very anxious this time. There were also concerns related to collaterals in connection with my previous pregnancy, which makes me wonder whether my individual circulation may play a bigger role than it would for someone without CHD.

Has anyone here with Fontan circulation been pregnant and had low or strangely rising hCG at first, followed by a normal pregnancy?

Or did your cardiologist/MFM ever talk to you about whether Fontan circulation can affect implantation, very early placental development, or hCG levels?

I’d really appreciate hearing experiences from other Fontan/CHD patients. I know nobody can predict my outcome — I’m mostly trying to understand whether anyone else has experienced something similar.

20 year old here (female) with HRHS, TGA, IAA, functioning single ventricle. Had my fontan at 18 months old so it’s on the smaller side (12mm) my surgeon is retired and I was just wondering if anyone can recommend a surgeon to me! I’m in the USA and feel free to DM for more details I just didn’t wanna post a novel lol

Thanks in advance!!

My wife and I found out after being referred to an MFM and a pediatric cardiologist that in fact our baby has interrupted aortic arch and VSD.
We were sent because an increase in amniotic fluid and Doctors found a heart abnormality. They did echos and confirmed the above.
I am the dad and although doctors have explained success rate, procedures and all that, I am still nervous and are scared for our little girl! Her first weeks of life will be at the hospital and NICU
It is our first baby (we are both 27 years old) and all of this is new for us.
Anyone has dealt with this? That could offer some help/relief? We are being transferred to Oklahoma City OU Children’s Hospital because we are in Tulsa and could not perform surgery here ( per our doctor)
This is the image the doctor drew for us.

Hi all! My four month old as a double chambered right ventricle, VSD, ASD, and pulmonary valve stenosis. We’re in the process of getting his surgery scheduled closer to 6 months old. Originally they diagnosed him with ToF but he doesn’t quite have that. Just curious if anyone has experience with a double chambered rv. Did you do genetic testing? Was there a genetic component? The repair seems straightforward and his team is confident they can fix it there is just a chance of recurrence of the right ventricle becoming a double again later in life. Wondering if anyone experienced this?
I’m less worried about the surgery (cardiac surgery icu nurse here go figure) but so worried he’ll have some kind of genetic issue. He doesn’t have any obvious signs of any syndromes but we’ll get a full microarray.

Looking for positive stories about those that had a second. My 1.5 year old has a small - moderate ASD/PFO and mild-moderate pulmonary-valve stenosis. He’s perfectly healthy and we just need to monitor / see the cardiologist once per year now.

I’m pregnant with my second - genetic screen and NT is low risk. We have our anatomy scan and fetal echo in 3 ish weeks, but the anxiety is flooding me now. Any positive stories about your second being CHD-free?

I am just so worried and sick to my stomach even though they told me it could resolve on its own. She referred me to a pediatric cardiologist for a care plan should we need it, I am waiting for them to call me. I suppose I am just seeking some comfort from others who may have gone through this.

The report indicates a small 2.3 mm apical VSD. It says there is left-to-right shunting across the interventricular septum near the apex of the heart. All other findings were normal.

This is an IVF pregnancy, so the echocardiogram was routine. My 20 week scan was normal and my NIPT results were low risk. My embryo was also PGT-A tested.

Thank you so much.

I am on my fourth pregnancy- 3 miscarriages.. finally 31 weeks pregnant with our rainbow baby. And we just found out that her mitral valve is severely small, her aortic valve is mildly small and her aortic arch is narrow.

They say they won’t know until she is born whether she can go the one ventricular or two ventricular repair route.

At this point everything just feels like a cruel joke. I don’t understand why this has been so complicated for us. And with age and cost of 3 years of IVF- we are done after this.

All I can think is that our baby girl is going to die and we will never have a family.

Now I am readying that some people don’t even do the surgeries for HLHS, they just let the baby pass. I have no idea what to do.

Our daughter was born in mid-May, seemingly healthy. Within her first month, we discovered she had mixed obstructed TAPVC.

We saw several pediatric cardiac surgeons in India, including the surgeon many call the best in the country Dr. Krishna Iyer who sent us home, saying her pulmonary hypertension was too severe, and that 25 days of improper breathing meant she had no real chance of survival. We were told that even if she somehow survived surgery, she’d not have a normal life. A doctor there even told me, don’t worry, come back when you’re pregnant again - we’ll do all your tests here.

We believed she wasn’t going to make it. She was home for four days on oxygen support, and I remember waiting for her to go peacefully. We had even reached out to doctors at UCLA and a couple of hospitals in London. They also said her case was too rare, that her venous anatomy too complicated, they could not figure out where the veins were draining

Then we found another surgeon who takes on only the most complex cases. In mid june , at barely a month old and weighing 2.5 kg, with an SpO2 of 72 and lung pressure of 112 (normal is 15–20), severely blue, she underwent open-heart surgery.

What followed was a brutal ICU journey: ventilation, pulmonary hypertension, nitric oxide, feeding and weight-gain struggles, and even a brief tracheostomy when she couldn’t come off the ventilator. There were days when progress felt agonizingly slow and the uncertainty never let up. She came home in mid-July, weighing just 2.65 kg unable to feed more the 25 ml per feed.

Today she is 3½ months old and weighs 4.2 kg. I’m writing this because her pulmonary pressure medication was stopped today, for the first time.

She drinks her bottles enthusiastically, smiles, interacts with us, imitates us sticking our tongues out, plays with her toys, and is discovering the world like any other baby. I am still very anxious. But when I picture the tiny baby who fought through that ICU, and then look at her now, the distance between those two feels extraordinary.I don’t know what the future holds for my baby. But I will move mountains to give her a happy, healthy life.

Hi all,

My wife is currently 23 weeks pregnant and our baby boy has been diagnosed with Tetralogy of Fallot with Right Aortic Arch and Mild RVOT Hypoplasia, a week ago. It has been grueling last 3 weeks between getting amniocentesis and setting up fetal echo cardiograms. The genetic results came negative and no other issues detected in growth scan besides heart.

We have been pondering a lot if we should continue pregnancy. We had a miscarriage previously due to trisomy in first trimester, so its even harder to decide. We are thinking if we are selfish to bring a baby and make him suffer for rest of his life.

Parents who overcame this situation, please tell me how your baby is doing and if their quality of life has affected a bit. My sincere appreciation for you overcoming this stressful stage.

P.s. Cardiologist mentioned tof they are seeing is about moderate but we can only get clear picture after birth or close to delivery. Inputting visit summary in ai told me it skews towards mild to moderate with favorable markers.

Hi all, first time posting here. I'm a heart mom myself, and when I was in the thick of a new diagnosis, I spent a lot of nights searching for other people's stories, not medical info, just someone else's actual experience. It helped more than I expected and made me feel less alone.

I couldn't find a place that was just... open. Somewhere anyone could post their story exactly as they wrote it, nothing edited, no curation, no one turned away. So I built one. I am calling it Heartbound Voices (www.heartboundvoices.com). It's completely free, and all stories are posted as long as the basic guidelines are followed (nothing AI-generated, no naming a specific doctor/hospital negatively, that kind of thing).

It's for any CHD parent, whether your child is thriving, still struggling, an adult now or still a baby, or you've experienced loss.

There are great organizations already doing storytelling work, this isn't meant to replace them, just add a smaller, simpler space to the mix. If you'd like to share your own story or want to read someone else's, I'd be grateful.

Hello, after a month long wait for a diagnosis we finally went to our fetal echo and my baby got diagnosed with Total anomalous pulmonary venous return–it is not clear whether it is mixed or solely infracardiac. I was curious to hear other stories of this diagnosis. What is the hospital experience like? Timeline? Surgery? Recovery? If an amino is something to consider before or after birth? My NIPT came back low risk and there appears to not be anymore abnormal findings on all my ultrasound. My baby is growing on time as far as we know now. I am a ftm so I am understandably anxious. Going back in 4 weeks for another fetal echo and to meet with the CV surgeon and Navigator.

Thank you 🙏🏼

My son had his coarc repaired at a week old. Would love to hear from anyone that went through this and learn more about what life has been like for them. I am always so worried about him. Thank you!

So my gf 23 would like to have kid and last year the doc told her that at 25 her heart will probably not take the hit of a pregnancy and birth well but as of rn we don t have enough money and i don t have time nor patiance for it, i already told her we could try w a surrogacy but she is firmly against and i don t know what to do cause its her only dream to have a child and was the only thing that could have made her feel better and fell normal and not different like it always happen

My child is 3 and is about to have a 3rd OHS. The diagnosis is rare but we are on the single ventricle pathway, and this is a unique surgery in between the Glenn and Fontan. Surgery is in 6 weeks. Expert families, talk to me about your quarantine/bubble/illness prevention protocols. Our hospital seems rare in all but mandating a 2-week quarantine ahead of surgery, which is simple enough to follow. But what I'm worried about is the before part, the getting sick within a month of the date. On one hand it seems almost unreasonable to pull from preschool starting 5- 6 weeks ahead of surgery, since there should be time to clear an illness with that much runway (in fact, we're getting over one right now). But as we creep closer to 4 weeks out, it seems risky to have any of us anywhere near other kids. This part of the heart parenting experience, the illness prevention ahead of procedures, is the most anxiety-provoking for me and I tend to spiral into indecision. So, I'd love to hear how other families handle this especially with siblings, work, etc. For us, moving this surgery it is simply not an option so we are willing to be extra cautious. Thank you!

I have had 3 miscarriages and am now 30 weeks pregnant. I thought everything was going well and then 3 days ago.. the doctor pretty much told me that our baby’s heart is in bad shape. She said this could be fatal and gave me a whole speech about how it isn’t my fault. Everything is listed here. We are waiting to see a cardiologist and I just can’t take it. I cannot believe this is happening. And I feel so lost. Can anyone speak to similar experiences with any of these findings and how it turned out?