What would you do?

I keep my name private because I don’t want harassment or judgment.

I have gotten word my baby will be born with the incurable HLHS or “half a heart” syndrome. I no longer live in the USA and I’m in EU where childhood intervention doesn’t have such good results.

I am sooo heartbroken. This was our baby from God. I thought he had blessed us. I’ve had so many miscarriages and health problems of my own and now have premature ovarian failure in my early 20s. She is probably my last chance.... anyway

50% of the babies die within the first week with or without surgery. Without is 100% by a month.

Then if they survive that they have an 85% chance of surviving the next TWO surgeries or more.... BUT then only 65% to 70% will make it to see age 7-10.... without a heart transplant.... then most of this group will make it until 18 but start to fade from there pretty fast

My baby also has a “maybe” bowel problem which huggers the risk. I’m told she might survive IF it doesn’t get worse she could possibly be even born needing just one surgery. But she def will never be “normal” and the amount of struggle, pain, quality of her life they cannot guarantee me.

I do an amino either way... but won’t get full results for two weeks which is long and I feel her everyday and it’s a painful reminder I want to be able to move on 😭😭😭I’m 21 weeks and three days now so I would just be at the cut off for doing something by then

But what would you do?

1. Interrupt pregnancy and let her die peacefully without machines and less traumatic for husband and I without full term birth

2. Have her and do no intervention

3. Have her and the 3+ surgeries.... even though she may have long term hospitalizations or bad quality of life... or maybe be normal it’s a gamble

4. Try the new risky experimental fetal heart surgery if I can and only if I meet requirements maybe have my baby die or be left with effects—- or no change to her condition but half of the successful entrances (80%) had this condition prevented or lessened

I don’t want to be selfish and have her suffer. I’m so terrified I will banish her to a life of pain. I love my little girl. I don’t want to be selfish and keep her just for husband and I.... I don’t know if I’ll ever have the heart to “pull the plug” if need be

UPDATE:

It’s not so easy to “move back”.... I’m settled here. I have not lived with my family/in the USA for 7 years. We have jobs, my husband is not a US citizen. I don’t think it’s fair him having to work for the treatment of our child never being able to see her...

It’s different the one surgery for before she’s born. That I would fly there have it and then come back here. But how terrible would that be for my family? A daughter potentially never seeing her father very much before she passes. This is not an option moving, I’ve decided.

Second off, the choices are with my husband and I. But I think it’s perfectly reasonable to ask for others opinions. I need comfort in what we choose being that it’s a rare condition and not everyone who has it talks about it.... I want as much as I can here. That’s the main reason why I’ve done this. Hence why its in a controversy and not a support form where it will get lost in the shuffle

Update #2: Due to some better advice and also statistics/rates that this turns out in a few weeks to be a less serious form .... or another type of repair needed... we feel it is best to continue the pregnancy. There is a good chance the baby’s left side can catch up... if it doesn’t we will get to that bridge when we cross it. Thank you all for the thoughts and kind words!!!!