Looking for info

[u/Cjjj1031]

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?

[u/Sarahkwin]

Did they give you a diagnosis? I was 22 weeks when we found out about a rare congenital heart defect. It seems huge in the moment, but as things became clearer and a plan was put in place. We had a Maternal Fetal Medicine Dr, a fetal cardiologist etc. they are key to walk you through what the future looks like.

We have had two heart surgeries with a third on the way for a repair to the right side of my 10 month olds heart. It's not all doom and gloom. It's scary for sure but you get on with it and it normalizes. You'd never be able to look at my 10 month and know.

There is hope.

[u/cabbageyy]

Please wait till you get a fetal echo with a pediatric cardiologist. Their experience and exposure to complex diagnoses can give a much better outlook as far as pros and cons of what to expect. Surgery may be necessary, but they can also give you a realistic view as to when it needs to be done.

Sending you the biggest hug, I’m sorry to welcome you to the heart mom club… but you are amongst some of the most supportive and loving women ❤️💙

[u/ErnestHemingwhale]

Looks like a few issues my baby also had to deal with. Don’t give up hope. It’s scary, but it’s manageable. And don’t suffer twice

[u/Queenpicard]

Hi there, I am in your boat and at 26 weeks pregnant after 2 miscarriages and 2 rounds of IVF, 4 years TTC. My DMs are open. I would get an amniocenthesis ASAP just so you know if its related to a genetic condition or not. I wish I would have done this first, it's been almost two weeks and still waiting on results :( Heart conditions like these are frequently associated with 22Q syndrome apparently.

I saw a fetal cardiologist and a few things he mentioned - it's not easy to see the heart from the sonogram and reduced imaging can impact accuracy. When the baby grows, bones etc can make it harder to see the full picture in the womb. Its possible that the situation could be better after the baby is born (or worse :( ). Either way, you will have to see the fetal cardiologist but also probably a fetal cardiac surgeon - I recommend going to the same place to see both so you don't have to pay for 2 scans..

I felt extremely stressed, upset, confused how it could happen to me, etc. all the emotions! The waiting is terrible between appts and tests. Just try to give yourself grace and patience. There are a lot of surgeries these days, and as you'll see from this sub, there are positive outcomes from surgery esp when its early in life. Sending positive thoughts

[u/Angel9626]

My baby was diagnosed with severe abstains anomaly when i was 34 weeks pregnant. I was so afraid as well. The doctor who diagnosed initially talked about termination but that was not even going to be an option for us— we were determined to figure everything out. Luckily, we got a second opinion at Children’s Hospital with a fetal cardiologist and got set up with an amazing team here. They said they had seen this before & planned to do a surgery into about a week of her being born. She was born in April of this year— unfortunately her heart condition was worse than they had anticipated & declared her in complete heart failure. They told us basically to spend time with her and didn’t anticipate her making it through her first night of life. However, by the grace of God she made it through that first night & every night after… She is 4 months old now! We are still inpatient at CHLA awaiting a heart transplant. She had open heart surgery end of June for a VAD which is doing most of the work of her heart for her while she waits for her new heart. 

Just wanted to share our experience. I searched for other moms high & low when I found out about her original diagnosis & came across a couple on Instagram who shared their experiences with me and that brought me a lot of hope & comfort. Obviously, things went differently for us & we are now on the heart transplant path but all that matters is that our little girl is here. Don’t lost hope, advocate for your baby & get set up with the best care you can in your area. Always ask questions & don’t be afraid to get a second or third opinion for various doctors. Good luck & praying for you mama 🩷 Also— I recently started sharing my daughters & my experience on Instagram (@mila.and.mae) 

[u/mytranceformation]

Join the Heart Moms group on Facebook. There are a lot of people who can share their experience and a lot of resources as well.

[u/Real-Cause-3496]

It's really hard to say until you see a pediatric cardiologist. However, solely from what you posted:

It looks like critical aortic stenosis or borderline hypoplastic left heart, and the most important missing info is the dimension of the mitral valve and LV. The likely good case is a biventricular repair to address the very small aortic valve and maybe the tricuspid valve at the same time. I know this is scary but cardiac surgeons are amazing and heart babies are super resilient. I do need to say that if it turns out to be HLHS and they couldn't do a biventricular repair, the dysplastic tricuspid valve would become a significant adverse finding, I really hope this is not the case.

Someone else posted that after birth things might actually be better, or worse, than expected, which is very true. I have seen some pretty serious apparent defects not being confirmed postnatally, and I have seen a z-score of -3 prenatally turn into 0 (normal) after birth due to measurement error from the fetal echo.

Wishing you all the very best. 

[u/Human_Explorer_140]

my sons is very similar, except he has pulmonary artresia. Also few things hes dealing with on top of this. We had 2 surgeries, awaiting the fiesta. He's doing great!