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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 · 30/01/2008 12:33

Thanks crabby, it's good to hear someone say with honesty that outcomes for this condition are variable - I'm not sure with something this serious that it is necessarily a case of doing everything one can possibly do, if you see what I mean, but maybe of knowing where to draw the line?

just thinking aloud....

OP posts:
sheila0 · 30/01/2008 13:11

Hi LittleMy34
I'm currently 23 weeks pregnant with our first baby (a little boy!) and at 20 weeks they found a problem with his heart, a trip to the specialist told us that our little boy has HLHS so I know excatly how you are feeling at the moment. For us, we have decided to continue with the pregancy but that doesn't mean that terminating is the wrong thing to do. We have been told that I would really need to have the amnio test done at 32 weeks so they can determine if the baby has a chromosome problem which may not be compatable with life due to the high nuchal translucency measurement which keeps increasing. So at the moment it is alot of waiting around and thinking of every possible situation, which can drive you mad!
My main problem is putting the baby through all the operations and he doesn't pull through.

Original poster
LittleMy34 · 30/01/2008 13:34

Oh sheila I'm sorry to hear of your diagnosis - did you have any kind of chromosome test already (amnio or CVS?) We had a CVS at 12 weeks which ruled out Down's, Edward's or Patau's syndromes, but now they're telling us there's something else called 22q deletion which isn't routinely tested for, which we could have an amnio for.

I'm very impressed with your decision to continue, am feeling worried that if we don't then it will be because we are not strong enough to take that course of action. It might be different if we didn't already have DS1, but I don't feel right about putting him through having his mum away for long periods while this baby is in hospital, plus the fact that we wouldn't be much cop as parents to him while it was all going on. But then again, I could just be scared and using this as an excuse to hide behind....

I hope you get some good news from your amnio and that you manage to get through the coming weeks without too much stress

{{{{hugs}}}}

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sheila0 · 30/01/2008 15:43

I don't think that it's not a case of not being strong enough at all!!! It's such a hard decision to make and there are so many outcomes and it may not work...... There are so many factors to consider. But one thing for me is that I don't have any other children to consider like you do which is easier for me. We didn't have the amnio done at 12 weeks even though they told us that due to the nuchal fold we were high risk for down's because of the risk of miscarriage (even though it's very small) because we wanted to go ahead with the pregancy anyway. I will have the amnio at 32 weeks and see what comes back.
One thing is that you should not feel like a cop out or that you are making excuses because you aren't, you are just weighing up all the possibilities and no matter what you will pick the right one!!!!!

Original poster
LittleMy34 · 30/01/2008 16:37

Thanks SheilaO and good luck with the amnio.

OP posts:
Saggarmakersbottomknocker · 30/01/2008 16:53

LittleMy - please don't worry about upsetting anyone with your decision. You do what you have to do and you don't have to justify to us.

The 22q deletion you spoke of is probably the one known as Digeorge syndrome. It's not an 'incompatible with life' syndrome but is extremely variable. Some people have it and don't know at all, others are much more affected. India Knight's daughter (she's a columnist for the Times if you don't know of her) has DiGeorge.

Sheila0 - good luck with your amnio. There's a couple of links earlier on in this thread that you may find helpful.

Take care both of you.

Original poster
LittleMy34 · 30/01/2008 17:14

Thanks Saggarmakers (you must tell me what the name means sometime!)

Think I'm starting to come to some sort of acceptance of the whole thing, although still prone to bursting into tears at odd moments! Now just have to make sure me and DP are in agreement.....

LittleMy

OP posts:
blueshoes · 30/01/2008 18:27

sheila0 and littleMy, I just want to register my support for you both.

I understand about the bursting into tears, even in front of doctors. It seemed that everytime I went for a scan, the doctors would tell me something else was wrong with dd's heart, brain, size (too small), umbilical cord (single artery). And I would just about have absorbed the latest news for a different consultant to tell me a different story at the next visit. It is so hard to diagnose antenatally. I was also brusquely told there could be a genetic defect with dd because of the unexplained cluster of soft markers for all kinds of things.

At the time, it seemed like nobody could understand the rollercoaster of emotions that dh and I went through and the enormity of decisions we had to make.

I am not sure how that helps you. Sorry, I am babbling. I wish you both all superhuman strength. You will get through this.

Original poster
LittleMy34 · 31/01/2008 08:52

So DP and I are pretty much of the opinion that we can't continue with the pregnancy - but now I'm petrified about the actual termination.....

and worried whether we're doing the right thing or not. Baby keeps wriggling and i can't quite believe what we're planning to do, but in my heart I know it's for the best. I just wish I could go to sleep and when I woke up it would be all over.

has anyone else been through this that could tell me anything about what it's like?

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sheila0 · 31/01/2008 09:16

HI LittleMy
Just wanted to wish you lots of love and support in your decision. You are doing the right thing for you and your family. {{{{hugs}}}}

ChinaSurprise · 31/01/2008 09:58

Hi LittleMy

Just wanted to let you know that I am thinking of you, and that you must do what's right for you.
I know that planning a termination now seems unreal and daunting, but if it's the right thing for you to do then I know you will pull through this traumatic time and move on.

Thinking of you sweetheart

China
xxx

nettiehay · 31/01/2008 10:56

Littlemy, I can't even imagine what you are going through, but I know that you, your DH and your DC will be fine in the end. You are a brave person and if you can cope up till now with all that has happened, you can cope with anything. My thoughts are with you. x

Original poster
LittleMy34 · 31/01/2008 11:07

Thank you all, I can't tell you how much it helps to know you're all out there thinking of us. Especially you, China, as I know you're only down the road!

(Filthy weather today, isn't it?)

I think we both know it's the right thing and the only thing we can do - it's coming to terms with the enormity of the decision that's proving difficult now.

off out to buy ingredients for DP's birthday cake now - managed to have Happy Birthday cards and present this morning

OP posts:
Saggarmakersbottomknocker · 31/01/2008 11:51

Holding you in my thoughts LittleMy.

aberdeenhiker · 31/01/2008 11:55

Hi Littlemy, I just got back from vacation and heard your news today. I'm so sorry sweetie, I'm thinking of you and am sending virtual hugs. Take care of yourself, your DH and your DS!

ChinaSurprise · 31/01/2008 12:28

I'm glad you're finding something nice to do LittleMy.
The weather is indeed grim and I am on my own in the office struggling to concentrate on work.
I really do hope everything now happens for you as quickly and as smoothly as possible. If you need to talk I am always here.
China
xxx

Rolf · 31/01/2008 13:24

LittleMy - I lost a baby at 19 weeks - she died in utero. I can answer any questions you have about that if you like, although I'm not sure how similar it is to what will happen to you.

Original poster
LittleMy34 · 31/01/2008 13:38

Thanks Rolf - I'm sorry to hear about your baby. If you don't mind me asking, did you have to deliver her and go through labour? I'm very worried about what that will be like.

LM

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lennygrrl · 31/01/2008 13:42

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lennygrrl · 31/01/2008 13:46

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nh101andhertwinbeans · 31/01/2008 13:53

Hi Littlemy, just popped over from due in June thread to say you are in my prayers. When I read about your decision I felt a sense of relief for you. I so hope that everything goes OK and that you have some happy news in the near future.

Original poster
LittleMy34 · 31/01/2008 14:11

Thanks nh101, it's lovely how many of you have popped over to say hello!

Am currently pursuing one more question with the cardiologist. Bump currently doesn't have Hypoplastic Left Heart YET, but has something called Aortic Stenosis which often leads to HLHS. I found a study (very reputable) which lists some other things you can look at to assess the likelihood of HLHS developing, and we want the cardiologist to consider re-examining the scan to look at those things. I know people who go and look up studies on the internet are a real thorn in doctors' sides, but I can't be happy with our decision unless I know we've explored every avenue.

If Bump only had Aortic Stenosis at birth, his long term prospects would be much improved, despite still needing surgery, so it's worth pursuing, although the odds aren't great. In the study, out of 23 babies with Aortic Stenosis at 20 weeks, 17 developed HLHS, so it's a slim straw at best....

Sorry, don't know why that all came out then! Thanks for your supportive messages xx

OP posts:
lennygrrl · 31/01/2008 14:16

Message withdrawn

Saggarmakersbottomknocker · 31/01/2008 14:26

LittleMy - me again You obviously have to cover all your bases. You're absolutely right Aortic stenosis alone is considered a significant defect , HLHS alone is considered severe both together is 'complex' and understandably difficult to manage. HLHS is often visible at 20 weeks so there is a possibility that it won't develop or will be in a mild form.

You're between a rock and a hard place at the moment and I so feel for you.

Saggarmakersbottomknocker · 31/01/2008 14:30

I do have an online friend who's child has HLHS complex with a type of aortic stenosis, treated at the Evelina.

I'm not altogether sure that it would help either way to speak to her though (she didn't have an antenatl diagnosis) I think it may cloud things for you further TBH.

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