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

[LittleMy34]

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

littlemy just to say thinking about you loads so glad your sil is there she sounds fab

So.....quite scared now, but am going to have large glass of wine and go to bed after dinner.

[repeat mantra] 24 hours and it will all be over [repeat mantra]

Don't be scared - there will be good people there to help you through it - and you can do this. You have been so brave, truly inspirational! Praying for you and dp as you face tomorrow.

Thanks NorthernLurker - am trying not to get too nervous but it ain't easy! I'm not religious although brought up a Catholic, but do find it really comforting that there are people out there praying for me. Any positive thoughts, in any direction, are welcomed!

thank you

LM x

Goodluck LittleMy. Will be thinking of you tomorrow. Take care
LLxx

LittleMy, keeping you and your family in my thoughts and prayers. Wishing you much courage and peace in your decision.

LittleMy

Just thought I would stop by and say hi. I am still keeping you in my thoughts and rooting for you to pull through this stronger and braver than ever. Your courage amazes me.

Sleep tight

China
xxxx

Good Luck for today LM

Hope all goes well for you, your DH and LO. Great he's got your SIL staying with you.
Stay brave.
LLxx

You're all in my thoughts today LM, good luck.

((((((hugs))))))

Thinking of you all xx

Will be thinking of you today LittleMy
(((hug)))
xxxxx

Good luck littlemy x

thinking of you and dp today littlemy lots of love and hugs
andiexxxxx

Thinking of you today, LittleMy..

we're all thinking about you LittleMy, xxx

Thinking of you today.
Lots of love and hugs!!!!

i read this thread last night and it brought tears to my eyes, be strong littlemy, wishing and hoping today goes as well as it can for you, x

LM - thinking of you and your family

LittleMy, keeping you and family in my thoughts and prayers

well, it's all over. home now.

to be honest, it had its amazing moments as well as its terrible ones. Daniel was born at 1.58am today and is just beautiful, despite being tiny.

We left him wrapped in a soft blanket, with the stuffed dog that was my favourite toy when I was little, and had him blessed. Got home and wandered round the garden looking at lovely growing bulbs and plants, and feel that it's time for the life affirming stuff to start. Have done an awful lot of weeping over the last 36 hours!

thank you for all your thoughts and prayers and wishes - they stayed with me in the delivery room and helped me through some of the toughest times

no doubt will be posting again soon
LM x

There are no words Littlemy - but just wanted to say I'm thinking of you xxxx

choking back sobs. Rest in peace, little Daniel. LittleMy, he will always be with you.

I know what you mean about the amazing moments as well as the terrible ones. Tom was the only vaginal delivery I managed in three pregnancies and that's something that will always be special between him and me.
Have been thinking of you a lot, LittleMy, so glad you are home now.
Bless you all XXX

Littlemy, I've been thinking about you and feel happy that you said you had some amazing moments, they will be ones to treasure forever. May Daniel rest in peace.

Littlemy - so glad you are home. You have chosen a beautiful name for your boy. I'm crying for you and for him - but my prayers are still with you and I know thats a lot more use!