Active discussions

Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Talk
Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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:
aberdeenhiker · 02/02/2008 21:12

LittleMy - you sound like the best mother to me! You and your DP have faced up to things in every way. I have so much respect for you and wish you every bit of strength you need in the next few weeks!

Kezza7779 · 02/02/2008 22:42

Ive just read this whole thread and littlemy i knew from your first few posts that this was the right decision for you. I felt like you were wanting people to tell you that termination was the right thing to do. I honestly think it is and the decision you have made is a very difficult but VERY SELFLESS one. My dh and i have discussed this senario (due to have nuchal next week) and we KNOW that this would be the rote we would take. something that effects the quality of the babies life would be enough for us. Luckily we havent yet got any other children so dont yet have to take that into consideration but should we of been in your situation we would be doing as you are for sure.
I had a termination many many years ago at 17 weeks and it was a very difficult and sad time. Afterwards i instantly felt like i had made a huge mistake and i was plagued with guilt and emotional pain. After a few days though i returned to my sensible frame of mind and knew i had done the right thing. I just wanted to say that afterwards you are bound to feel like youve done the wrong thing simply beacuse its such a hard thing to do, but once youve come to terms with whats happened your frame of mind will change. Its unlikely youll walk away saying YUP i did the right thing beacuse you will be grieving.
Hve you thought about what will happen do your LO once its born? I made a huge mistake and didnt consider this and to this day its the one thing i regret, i wish i could of had some sort of service and memorial, instead i dont know where he is or what happened to him and thats the saddest part. Just wanted to make sure youhave thought about this part? Anyway sorry for the log post i just wanted to share my experiences with you in the hope it will help you thru this difficult time. Good luck with everything and lots of love and hugs to you xxxxx

nh101andhertwinbeans · 03/02/2008 11:38

Hi Littlemy, it is good to hear you felt relief after seeing the doc last week. I know how you feel about not thinking about getting pg again out of respect to your baby. I felt that way after my mmc (missed miscarriage - at 13 weeks pg), i didn't want to get pg again straight away cos it felt disloyal to the baby i lost. Not that my mmc is at all the same as what you are going through. Not at all. But even that was very difficult so i can kind of understand what you must be going through. I think you have made the right decision for your baby and you and your family. Good luck this week (if good luck is reallly the right sentiment, I fear it is not)

Original poster
LittleMy34 · 03/02/2008 18:12

thank you all, we are managing to have a reasonably normal weekend by just not thinking about it all, as I think that's the only way we can cope right now....

it's likely to be Thursday next week so no doubt will be on here lots between now and then, and afterwards.

thanks again for all your support, it really helps

LM x

OP posts:
bundle · 03/02/2008 19:50

littlemy, glad there's some "normality" for you this weekend, xxx

Original poster
LittleMy34 · 04/02/2008 11:53

Hi all,

just to say that we have confirmed with the hospital that we're going to have the termination. We're going in tomorrow to take the initial tablets and sign forms, and then will go in on Thursday for the induction etc.

feeling sick and tearful, but still know this is the right thing to do. I hope noone is offended by our decision - we have thought long and hard about it and really feel it's the right thing to do.

I'm sure I'll be posting this week both before and after, but wanted to thank you all - again - for all your love and support so far. It's been invaluable - even DP has decided MN is a wonderful thing!

LM x

OP posts:
NorthernLurker · 04/02/2008 11:59

Littlemy - will be thinking and praying for you and dh during this hard, hard week. You are being so brave - my heart goes out to you.

sheila0 · 04/02/2008 12:11

Dear LittleMy.
Sending out lots of hugs and support to you and your family right now!

sheila0 · 04/02/2008 12:13

By the way..... you are doing the right thing and no one will be offended by your decision as you are the one's living it!

marina · 04/02/2008 12:14

Wishing you all the best this week LittleMy, we are here for you whenever you need us
You have made the right decision for you as a family, based on love for all your children. XXX

RosaLuxOnTheBrightSideOfLife · 04/02/2008 12:17

I will be thinking of you this week. Don't worry about offending anyone, you have made the right decision for you, and I am sure nobody could possibly disagree.
Rosa xxx

systemsaddict · 04/02/2008 12:28

Hi Littlemy, will be thinking of you this week. You have thought about this decision so carefully, with your head and with your heart, I'm sure that you and your dp have come to the decision that is the right one for your baby and your family.

I have good friends who terminated at around 20 weeks following a Trisomy 18 diagnosis. It was a terrible decision to have to make but they talk so positively about the love they had and still have for their little daughter, and the privilege of having had her even for such a short time. They named her and scattered her ashes in a special place, and talk about her a lot.

Wishing you strength and support in the weeks ahead.

andiemustlosehalfastonemore · 04/02/2008 13:05

littlemy don't ever feel you have to justify your decision to anyone you are doing the right thing for you and your family
will be thinking about you loads this week and sending lots of hugs and strength
andie xxxx

goingfor3 · 04/02/2008 13:09

Littlemy I hope it goes as smoothly as possible. Always remeber you are doing what is rght for you and your family and you are the people who count so don't feel you need to justify it to anyone else. You'll be in my thoughts this week.

majormoo · 04/02/2008 14:55

Littlemy, I will be thinking of you. You are in the middle of a strange time, when you in limbo waiting for things to happen, so I hope you are doing OK. As long as you and your DH are sure you have made the right decision, that is what is important.

Original poster
LittleMy34 · 04/02/2008 15:28

Have been rather thrown a loop by a letter from the cardiologist which gives us a bit more hope that the baby might only develop severe aortic stenosis, rather than full HLHS.....not sure where this leaves us! Aortic Stenosis is still a significant heart defect with all the attendant impacts on lifestyle and quality of life, and it would still need some significant surgery early on in life.

But it's not as serious as HLHS, and has less of a risk of dying early on.

But obviously they can't guarantee anything, so it still could be HLHS by the time we reach full term.

Now I'm all confused again and wondering what to do.

OP posts:
andiemustlosehalfastonemore · 04/02/2008 15:45

littlemy call the cardiologist and ask to speak to them now the two conditons are different in both surgery and outcomes and you need to feel comfortable with your decision. Call the secretary and ask for an urgent appt if needs be then go up to guys to the fetal cardiology unit there and ask to be scanned they are the largest fetal cardiology unit in europe and will be able to give you the best possible advice the two consultants are Dr Sharland and Dr Simpson there is a link to the units web pages here
there is also a lovely counsellor there (a friend of mine) who is very experienced in talking to couples in your situation
I wouldn't normally suggest this but you really need to feel comfortable with your decision and a second opinion may help you to do that and it is your right to ask for one

Original poster
LittleMy34 · 04/02/2008 15:45

My gut instinct is that this doesn't change anything - we knew that there was a possibility that the baby wouldn't develop HLHS, but we felt that even a diagnosis of severe Aortic Stenosis would be something it was unfair to put our child through. But for some reason it's left me feeling as if some sort of outcome where everything is ok would still be possible.

which it isn't.

aaaaaaaaaaaaaaaaaaarrrrrrrrrrrrggggggggggghhhhhhhh!

OP posts:
andiemustlosehalfastonemore · 04/02/2008 15:47

littlemy certainty unfortunately is just not possible in these situations which is why it might be worth talking to someone else about it and getting a second opinion
have the hospital offered you any counselling?

goingfor3 · 04/02/2008 15:51

Littlemy ask to speak to the cardiologist now! I really don't know what to say as it's such a hard time you really don't nned to hear anything which could confuse the issue. I feel so much for you and am sitting here in tears thinking about all you are going through.

Original poster
LittleMy34 · 04/02/2008 16:23

Have just had a long chat with the cardiologist. Her letter wasn't phrased very well, but she's gone into it all in quite a lot of detail, and I'm sure we're doing the right thing.

The degree of aortic stenosis we have already, at 20 weeks, means that treatment isn't going to be straightforward even if it doesn't progress at all, and the likelihood is that it will get worse, which means that it's going to be a difficult road whatever happens.

so we're back to where we were, but I feel ok about that - it's the right thing to do.

thanks andie, you made me get off my backside and ring the cardiologist!

OP posts:
Original poster
LittleMy34 · 04/02/2008 16:25

Got to go and pick up DS1 from nursery now - thanks again you lovely people

x

OP posts:
aiti72 · 04/02/2008 16:51

What a horrible rollercoaster. I too will be thinking of you, LittleMy. You are a very brave woman.

andiemustlosehalfastonemore · 04/02/2008 17:57

littlemy so glad you have managed to speak to her you are having a really bumpy ride but you are such a brave person I am in awe of your calmness and strength at such a difficult time

NorthernLurker · 04/02/2008 23:30

Oh dear - what a confusing day for you - pleased you got to speak to the doctor - and really it's just provided you with extra confirmation of what you had already learnt and dealt with. Will be thinking of you tomorrow and praying for you and dp - how is he by the way?

Swipe left for the next trending thread