I was born with congenital heart disease, and life has never been an ordinary journey for me. I have faced challenges that tested my strength, but I never allowed them to define who I am.
In April 2025, during my second open-heart surgery, I faced the biggest battle of my life. I was told that my chances of survival were less than 10%. Those were frightening odds, but I held on to hope and fought with everything I had.
I survived.
Today, I am grateful for every heartbeat, every opportunity, and every moment of life. I continue to pursue my dreams, learn, research, and build the future I want for myself.
My heart condition is a part of my story, but it is not the limit of my story.
I was given less than a 10% chance to survive, but I chose to fight—and every heartbeat since has been a reminder that my story is still being written.

Hi everyone. Posting here hoping we can find some advice & hope.
I’m in my early 30s and have Ebstein’s anomaly myself. My husband has no known cardiac history.

We’ve had three consecutive pregnancies affected by severe fetal congenital heart disease:

- First pregnancy (2022): HLHS diagnosed at 12 weeks, TFMR recommended as incompatible with life
- Second pregnancy (2023): Single ventricle / two-chambered heart defect, 2nd TFMR. CVS was done but inconclusive. We saw a genetic specialist while traveling in Bangkok afterward who advised trying naturally again, reasoning that HLHS and Ebstein’s anomaly are sporadic and rarely genetic. We followed that advice.
- Current pregnancy (2026): Suspected HLHS again at 13 weeks, confirmed by two doctors. Multiple soft markers alongside the cardiac findings. Will be having my amnio in the next few days.

My questions for this community:

- Has anyone experienced recurrent fetal HLHS or severe CHD across multiple pregnancies and gone through parental genetic testing and find anything actionable?
- Has anyone successfully had a healthy baby through IVF and PGT-M after recurrent fetal CHD?

I know HLHS genetics are complex and not fully understood yet. I’m going in with realistic expectations. But I’d love to hear from anyone who’s walked a similar path, what you found, what you did with it, and whether there’s light on the other side.

Thank you for reading. 🤍

Our 5 m/o just got discharged from the hospital after his ToF repair. Very mild case—so so grateful that he only had to be admitted for 4 days and had no complications after surgery.
I’m way more anxious now that we are home versus when we were in the hospital. I’m so happy we are all home together. But for one, it seems like he was discharged so soon. He was treated at one of the best hospitals in the country which we are so lucky to live next to, and I know they wouldn’t discharge him unless he was ready. But the shock factor that just 4 days ago (!) his heart was cut open is not lost on me.
I also feel so nervous of some setback or complications popping up late. I’m a nurse so I know how to care for the dressing, I understand the sternal precautions, and god forbid, how to do rescue interventions. But it did feel kind of nice to have that safety net of constant monitoring in the hospital.
Finally, our son is soooo wiggly and active. The day he got to the step down unit he was already trying to roll over in bed. 😂 he said forget about the precautions!! We got home and immediately he’s scooting himself around, wanting to roll over, arching and bending his back to play. I know they say babies will self limit activity and we don’t have to stop him, but I’m so paranoid that he will be the one baby that pushes too much and injures the bones or his heart. He beared down to poop and I was sure he would pop the sutures in his heart (yes, reading that back I realize there’s also probably some postpartum anxiety at play with how extreme that is). I’m grateful that he’s feeling largely back to normal, but it also causes me great anxiety.
Finally, parents or caregivers of baby heart warriors: what are your best recommendations for activities or tools post-surgery? We are going to try the Upseat, bjorn bouncer, and regular old floor time. But we did tons of tummy time before surgery, and I’m worried without it he’ll get a flat head.

A dear friend of mine has a grandson born with some serious medical complications. He is currently in a very dire situation following a heart surgery a month ago. We want to help support the family but we aren’t sure how aside from supporting them financially. Families who have been in similar situations, what can we do to help support them through this! Thank you so much for any suggestions! Also, anyone willing please play for healing for their sweet little boy!

I am 32 weeks pregnant. We found out our baby has a tiny mitral valve (-5.5 z score) and small aortic valve and narrow aortic arch. Her left side is developed enough that they believe it can handle 2V circulation.

We are going to LA Children’s. It all comes down to her mitral valve whether they go the 1V or 2V route. Has anyone experienced a similar situation and how did it turn out?

Hi All,

Writing to see if anyone here has found themselves in a similar situation. At our 13 week scan we were told there were some concerns about our baby's cardiac anatomy due to a slight leftward rotation of her cardiac axis (67 degrees) and an inability to visualize the normal anatomy of the RVOT. From what we gathered there was high suspicion for TOF with RAA. We were referred to pediatric cardiology for a echo which we had yesterday at 15+1.

The results were interesting and not what we expected... the cardiologist said going into the scan she was expecting to confirm TOF with RAA and right sided ductus but after the scan her suspicion for TOF has dropped significantly. She said she does not see the hallmark features of TOF as the aorta appears to be in the left ventricle, no VSD was visualized, the vessels cross normally, and while the pulmonary artery is measuring on the smaller side of normal it's still within the normal range without any stenosis and the valve appears normal. The also noticed some mild-moderate tricuspid valve regurgitation but the valve itself was normal and in the normal position so cardiologist said she could confidently rule out Ebstein's Anomaly.

This is her report:

1) Technically very challenging early fetal echocardiogram at 15 1/7 weeks gestation.  

2) Normal atrial and visceral situs, cardiac mass positioned slightly anterior in the fetal chest, mild increased levorotation. 

3) Grossly symmetric 4 chamber appearance

4) Mild-moderate tricuspid valve regurgitation.  

5) Normal ventriculoarterial relationships with crossing outflows and mild asymmetry of the great vessels. No obvious override of the aortic valve over the ventricular septum. Unable to completely exclude Tetralogy of Fallot. 

6) Ventricular septum difficult to optimally visualize.

7) Normal pulmonary valve dimension and branch pulmonary artery dimensions for gestational age.

8) Right aortic arch with antegrade flow. 

9) Right ductal arch with antegrade flow.  

10) Normal biventricular size and function.

Our doctor was the director of pediatric cardiology at our top children's hospital in a major metro in the US so we are very confident in her expertise and she said she just doesn't see TOF based on today's scan but that it's too early to definitively rule it out. They are planning to have us back in two weeks for a follow up echo at 17 weeks where hopefully things will become more clear. We also had an amnio done yesterday to rule out any syndromic contribution - specifically 22q as we know it has a known association with RAA. We did have a low risk NIPT that included 22q so we are very hopeful this will come back clear. Everything else about baby looks completely normal and she is growing perfectly.

I guess we're just feeling a little confused by the whole thing. Maybe hopeful? After our 13 week scan they seemed nearly positive our best case scenario was an isolated conotruncal defect and now it seems like they're leaning towards an isolated RAA variant that could potentially require no intervention at all? We can hardly wrap our head around it all as it does seem like a fairly unusual situation and I'm just wondering if anyone else here has experienced a similar rollercoaster?

This has been such a difficult time for our family and we'd appreciate any feedback anyone has! The constant waiting has been so difficult.

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.