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

Thank you all you lovely people - cremation was short and sweet. The hospital had put Daniel in a beautiful little casket with a brass plaque with his name on it, and put a yellow rose on top. The lady who brought him also told us they'd made sure the stuffed dog we'd left with him (my favourite from when I was little) had been put in there with him as we'd asked.

We added two sunflowers from us and a bunch of paperwhites from DS on top, so he had some lovely flowers.

Very short blessing and prayers, and the minister read our poem, and that was it really. I wept throughout but it felt ok to do that, and then we went for a coffee with my mum.

So all ok, and I'm glad we did it even though it was quite difficult to go this morning.

thanks for all your thoughts and prayers, we've been really touched by the amount of support you've all offered us over the last couple of weeks.

LM x

Sounds like it was a lovely service.

Deb

oh littlemy, how lovely! the flowers sound gorgeous. be good to yourself, xxx

I am so glad you had this special moment to say goodbye to Daniel. Like everyone else who has posted on this thread, I am full of admiration for your courage and dignity in this terrible situation. Thinking of you and your family.
Rosa xxx

The service sounds meaningful and poignant. All my love and prayers for you and your family.

That sounds beautiful - it must have been very, very hard for you and dp but absolutely the right thing for all of you to have. I hope you can have a peaceful and lovely weekend together and then look forward to your time away.

LittleMy34--so sorry to hear about your loss My baby has just been diagnosed with Situs Inversus (all the organs are flip flopped to the opposite side) and HLHS. We had gone for an early 15 week anatomy scan due to an increased nuchal translucency. I will soon know the pain you are going through. The termination is scheduled for tomorrow. K.I.T. and I am thinking of you.

dlynn - I'm so sorry to read your terrible news. Will be thinking of you and praying for you tomorrow

oh dlynn I'm so sorry - it truly is an excruciating decision to have to make. I hope tomorrow goes smoothly for you.

We were taken great care of by the midwives, and supported every step of the way, so don't worry, you will be ok. We, and so many others on MN, are living proof that this experience can be got through, even though it seems completely unbearable to think about.

All my best thoughts and hugs go out to you
LM
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oh dlynn I'm sorry.

how lovely to you littlemy, to offer such support at this really difficult time for you, xxx

dlynn- I'm so sorry to hear about your loss, hope all goes well today. Take care

LittleMy. I'm so glad to hear that Daniel had a peaceful, dignified service. It was what you all deserved.

Dlnn. I'm so sorry to hear you're going through heartache too. Sending you my best wishes
xxx

Hi,
I am currently 22 weeks pregnant,
And at my 20 week scan, they noticed our baby had a heart defect (hypoplastic)
We have been sent for several scan and to a fetal heart echocardiologist where they can see the left heart is slightly smaller than the right and the left ventricle that flows the blood/oxygen to the body is pretty small, (which means several surgeries at birth) but they looked into it further as this doesn't normally happen on its own,
They looked to the brain of baby, and found that the cerebellum one side is smaller, meaning thete maybe oncerns of difficulties within in the brain,
I was then booked for a scan to see a consultant (all this happening within a week of each other) and she confirmed, the brain/cerebellum is small.. and heart defects.
I was offered tablets there to terminate, which I refused as I want a chance to see if things could change. They mentioned an amniosentesis and then an mri scan, but the mri scans don't take place until earliest 25 weeks as they believe the babys brain can still develop up until 28 weeks,,, and they will have a more clearer picture.. I have had the amnio 2 days ago and waiting now on results. It's heartbreaking,
Has anybody been in this same situation before?? And if so, what were the outcomes? Is there a chance the outcome can chnagr? I understand everybodys circumstances are different..

Thank you