Being told that Bean cannot survive...

[Vix182]

Yesterday I found out that my little bean, 13+1 weeks, has an extreme form of hypoplastic left heart syndrome. Unfortunately, surgery is not an option because Bean has only developed one heart chamber, and the consultant has informed us that this is not something that will get better. Bean cannot survive outside of my womb, and is alive only because I am keeping it alive. It's something that we never thought would happen. We have been advised that there is no point in continuing the pregnancy.

This was due to be our first baby. Although we are being quite pragmatic about it, and know that it's for the best, my heart has broken.

The rest of the baby is perfectly formed - Bean is even a little big, and on the first scan the due date was moved by two days to reflect this. I cannot help but grieve for the little human that I saw rolling around on the screen, even though I have never and will never meet them.

Has anybody experienced anything similar? How soon until it stops hurting?

 

[sarahmc89]

Are they not even able to consider a heart transplant after birth? I am so sorry

 

[Vix182]

Hi Sarah,

Unfortunately not. Bean doesn't really have a heart to replace. Only a quarter of what should be there. At the moment they're using my heart and body to filter the blood and provide all the nutrients. Once baby leaves me, there's no heart to support its little body. I asked all the questions. There's literally nothing that they can do.

 

[Syd43]

I'm so sorry, how incredibly sad.

 

[stacesl3]

I'm so very sorry to hear this x I have had two losses, both pretty early. It's heartbreaking it really is, Just let yourself grieve for your little one, it does get easier but you never forget. Big hugs to you xx

 

[MrsS15]

I'm so sorry to read this hun, how devastating I'm a children's nurse and worked in cardiac until last year. HLHS is a very difficult condition to live with when its treatable. It's amazing that your body is able to keep your little one going right now and must make your decision even more difficult when right now your little one is looking so healthy on the screen. Are they offering you a medical termination? Xx

 

[SpiritedAway]

So very sorry for you and your partner, I just cant begin to think how hard it must be for you both right now.

All the love x

 

[Vix182]

Hi ladies,

Thank you for your kind words. It's a comfort to know that people will listen, as funny as that sounds.

Mrs S - yes, they have offered me a termination. We've been told that there's really no point in continuing, and we understand that it is the very best option, particularly with the extremity of the condition.. It's just the biggest anti-climax in the world.

In a way, I'm drawing comfort from the fact that the rest of the baby is so big and healthy, because I know I'm giving it all the right things, and in the future this will be a positive. I just can't believe we've had such bad luck. I guess nobody expects it to be them xx

 

[Browneyed Girl]

I'm so sorry, what a devastating situation to be in xxx

 

[SiameseCatLady]

I am so sorry that you're facing this and you should be so proud of yourself that you can see the positives already. Wishing you lots more positivity to cope with whatever lies ahead. Xxxx

 

[Blooty]

Hi Vic I'm so sorry your having to go through this. m going through something really similar sadly. We went for our 12 week scan on Friday and we were told out baby had a large cystic hygroma and abnormalities of the skull and wouldn't survive the pregnancy. We have to go for more tests and a more detailed scan but it's clear they are already advising a termination. Can't offer much advice as I'm totally all over the place. But just wanted to say your not alone. Xxx

 

[Juice]

I'm so sorry you're going through this. We are also going through a similar experience. Our baby had a cystic hygroma detected at 12 weeks after further tests we found out she has Turner's syndrome. She now has fetal hydrops and has very little chance of surviving. I'm now 19 weeks pregnant and the thought of letting her go is heartbreaking, but although there's almost no chance, there is a tiny one that she could come back from this. If she had absolutely no chance at all, I'd let her go now. The longer I'm pregnant the sadder I feel that I'm probably not taking a baby home at the end. But there's a chance and I can't get past that.