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Original poster

Aortic Stenosis / Hypoplastic Left Heart Syndrome at 20 weeks - any experiences?

239 replies

LittleMy34 · 28/01/2008 14:17

Hello all,

Have just had a foetal heart scan at 20 weeks following a high nuchal translucency measurement, and unfortunately they found that the baby has severe aortic stenosis - a narrowing of at least one and possibly two of the main arteries. They seem to think that it's fairly likely to lead to Hypoplastic Left Heart Syndrome by the time the baby is born, which is very severe and the baby would die within a few days without major surgery.
If we go ahead, the baby would need surgery within a day or two of birth, followed by two more ops before he reaches school age. the fist op carries a 30% mortality risk, the second two are less severe.

So now we're trying to decide what to do - which is proving a bit difficult, to say the least..... Neither option seems like the obvious thing to do.

anyone had this experience? how on earth did you go about making a decision?

any thoughts welcomed.

LittleMy

OP posts:
Original poster
LittleMy34 · 05/02/2008 12:08

Just got back from the hospital, consent forms signed, first tablet taken, the die is cast. It was all ok, although quite tearful at the actual moment of truth. The midwives and consultant were lovely and left us in a room by ourselves to have a bit of privacy.

DP is ok - breaking down every so often, makes me feel bad cause I'm now in my 'get on with it and don't have any emotions' state, which I think is the only way I'll get through the process. But I think he'll be ok, although the actual day will be sheer hell.

His sister is coming down tomorrow to look after DS1, which is fab, as they are very close and she had a MC a couple of years ago so knows what we're going through. And I think he needs someone to talk to who isn't me, as he's being really strong for me but also needs to grieve himself.

Also DS1 loves SIL, so I won't have any worries about who's looking after him while we're in the hospital.

So getting through it - I think now it's all started we just have to focus on getting to the other side in one piece.

LM x

OP posts:
marina · 05/02/2008 12:34

I think it is fair to say that dh found the labour and delivery much harder than I did, as you say, we have something all-consuming to focus on.
I was offered valium when admitted 48 hours later and I now wish we had piped up and implored the (wonderful) midwife for some for dh too, just a thought
Have been thinking of you all such a lot
We took a photo of ds1 with us to remind us of the good things in our life

systemsaddict · 05/02/2008 12:56

Thinking of you and dp LittleMy. Being able to access that 'coping' state is a wonderful gift to get through times like this. Remember everyone will be here for you later too, if you find it all hits you some time afterwards.

andiemustlosehalfastonemore · 05/02/2008 13:16

littlemy thinking of you and your dp loads glad your ds1 will be well looked after while you are in hospital

NorthernLurker · 05/02/2008 13:59

Thinking of you both - you will get through this.

sheila0 · 05/02/2008 14:31

Hi Littlemy
Thinking of you, DP and DS1.
You will all be ok and get through this.

nh101andhertwinbeans · 05/02/2008 14:42

Thinking of you, your last post made me cry. Keep being strong x

bundle · 05/02/2008 15:06

lots of love to you littlemy, xxx

duvetwoman · 05/02/2008 16:23

so sorry to hear you are having to go through something like this, just be there for each other xx

MyEye · 05/02/2008 16:32

LittleMy, thinking of you and DP, wishing you both strength
xx

goingfor3 · 05/02/2008 16:38

Little just to let you know still thinking of you.

Original poster
LittleMy34 · 05/02/2008 17:33

thanks, all of you. have been feeling quite nauseous all day but curled up on sofa watching a movie. DP has gone to pick up DS from nursery, so am preparing myself to be cheerful Mummy for a bit!

all your thoughts make a big difference LMx

OP posts:
bundle · 05/02/2008 17:37

littlemy, I've been thinking about you today, xxx

disneystar · 05/02/2008 21:29

my son was found to have a heart problem at a scan at bristol at 20 wks pg we had a decision to make like yourself lots of info lots of talking to people didnt know what to do he had to have operation they didnt know how many till he was born we decided to give him a chance if he was strong enough we were going to help him it wasnt us having it done and we giving him a chance on life i know this is a personal thing to decide but we were prepared when he was born we knew kind of what to expect we were going to have a sick baby and not focus on the normal things that happen when in hospital like visitors excitement etc if that makes any sense we had to be strong he was ill when born and blue and didnt breathe properly at first i felt sick and cried thinking what have i done to you ive let this happen but my dh was my rock for us both he had 3 heart attacks very early on which were extremely scary he ended up having a double heart bypass as a new baby my son is now nearly 8 and i am so proud of him he knows his limitations he loves rollercoasters with his dad i am terrified and dont watch but we took a chance on him once and im not going to hold him back now he still cant walk far gets breathless and tires easily we have to watch his diet and many numerous things even though it turned out fine aj has to have check ups for life and can have another operation at any time but to be honest i didnt cope when it was all happening i was a mess and cried all the time your decision has to be based on many factors you will not be selfish taking anything into consideration it all matters i wish you all well in the decision you choose please e-mail me if you have any questions or just need to chat take care of yourself x
[email protected]

Original poster
LittleMy34 · 05/02/2008 22:11

That's very kind disneystar thank you but we are going ahead with the termination, so I'm not sure it would help. but thank you very much for posting, it's much appreciated.

LM

OP posts:
Original poster
LittleMy34 · 05/02/2008 22:15

sorry hope that didn't sound rude

really glad to hear your DS pulled through and is enjoying life.

LM

OP posts:
cali · 05/02/2008 22:31

Dear LM,
have been following your post and have not been sure whether to post or not. If you look at my profile you'll see what I do but that's not why I'm posting.
A little while ago, we had friends who were pregnant at the same time we were, but tragically they had almost the exact same diagnosis as you and your Dp and had to go through what you are having to endure at the moment.
I remember saying to my friend that she would always be her baby's mummy and that no one could ever take that away from her.
Just want to say that I'm thinking of you both and am here for you,
xx

NorthernLurker · 05/02/2008 23:06

LM - wishing you and dp a peaceful night.

marina · 06/02/2008 10:42

Thinking of you today and hoping you managed to sleep

debinaustria · 06/02/2008 12:58

How are you doing today LM? Thinking about you .

disneystar · 06/02/2008 13:04

LM i hope you are ok and yes thank you my dh is much better now it was a scary time but its over now hes on strict instructions and we have to keep to them which he doesnt like you are a very strong brave woman i respect your courage in your decision you made if i were faced with the same choice as last time my decision would be the same as yours take some much needed time out love each other and try to relax my thoughts are with you take care of yourself x and you didnt sound rude at all

Original poster
LittleMy34 · 06/02/2008 13:19

Thanks all, SIL has come down this morning which is brilliant as have been having long girly natters about it all and feeling that we're doing the right thing. she is fab lady so is being massively supportive

so not too bad, had complete breakdown last night and ended up weeping in the bath - I felt like I was in some terrible cheesy film as I just couldn't stop crying and it was really huge sobs with runny nose and all the trimmings - nice. It was quite cathartic though and afterwards it was really clear that I wasn't crying at the decision we'd had to take but grieving for the idea of the healthy baby we thought we were going to have, and also being scared of what's going to happen tomorrow, so I think it was healthy to get it all out.

although I'm sure there'll be lots more weeping over the next few days/weeks etc.

so it's up and down, a real roller coaster of emotions at the moment.

it's very comforting to know you're all out there, even though I have no idea what any of you look like! Thanks

LM x

OP posts:
Saggarmakersbottomknocker · 06/02/2008 13:21

LittleMy - will be thinking of you tomorrow. I hope it goes OK. x

NorthernLurker · 06/02/2008 14:09

HI LM, keeping on praying for you and dp here. I'm so glad you've got your sil - sounds like she's being a real rock - and I think the crying is a very good thing as well. The snots not so good - but I think we can stand hearing about it
Has dp got some time off work this week and next?

bundle · 06/02/2008 14:16

hi littlemy, glad your sil is a great help to you. on my profile (for ltd time only) is pic of my New Hair if you'd like to see it!

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