Termination for medical reasons

[MorganM16]

Hi I’m 21 years old and currently 31 weeks pregnant with my first baby , I’m not sure how to work this site so I apologise if I’ve posted this wrong. but anyway I’m a first time mum and at our 20 week scan me and my boyfriend found out we were having a girl. Not only that but we found out she had quite a severely large hole in her heart😔 2 weeks later at 22 weeks pregnant We were seen by a team of cardiologists who explained that our baby had a severe heart defect including the massive hole in the middle, a very narrow aortic valve and a tissue build up around the valve allowing less blood to flow around the body. As result of that they have offered us a single ventricle operation wich includes 3 operations until she is 5 however this does not fix the heart but is just a “get by operation “ with only a life expectancy of around 20 to 30, they give her heart problem a 9/10 of how major they think she is and have offered us a termination. Reluctant to give up me and my partner have been to Leeds and spoke to hospitals in London and even Canada they have all explained to us there is not much more they can do that alder hey can’t. And we are truely heartbroken, I understand it’s late but we attended a progress appointment 2 weeks ago and they have told us not much has changed, although it hasn’t got worse and she has 2 good pumping chambers wich is a good sign. we need to make a decision as soon as possible but I just cannot come to a decision and put this tiny, precious life in my hands, my partner believes it would be better to terminate because he does not want her to suffer, and we are struggling to meet eachother with this decision because I really don’t want to give up hope. If anybody can share with me any of there experiences or opinions I would really greatful I just don’t know what to do. It is so heartbreaking
Thankyou
💔💔 xxx

That really is a heartbreaking quandary, I'm so sorry you're going through this.

I had a TFMR last year but it was a much easier easier recipe as our baby would not have survived to birth and I was much earlier along. It was still a horrible decision though.

Have you spoken to ARC, they are a charity who work with families in our position. They will be able to help you think through your thought process.

Don't rush into any decision, you need to be sure you're doing the right thing for all of you.

I cannot imagine what you are going through I wish I could give you a big hug! It's a massive massive decision but such an enormous decision needs to be made fully informed, and the decision ultimately lies with you. Do not be pressured by anyone including your partner. I myself in your situation could not go through with a termination so late unless specifically told by the doctors that the baby wouldn't survive long after birth. And then I would still struggle. Your daughter could have an amazing life in the short life that she might have, or she might outlive the expectancy. My friend had a baby who was expected to be severely disabled but has amazed the doctors with the progress she has made and was nowhere near as bad as they thought.
I really don't mean to sound like I'm guilt tripping you please don't think that!