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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

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Original poster
LittleMy34 · 31/01/2008 14:33

thanks Saggarmakers - the cardiologist said in her experience, this particular level of Aortic Stenosis (she classed it as moderate to severe) was more likely to lead to HLHS than not, but I don't know what she's based that on. It may be that she's already looked at those factors listed in the study, but for my own peace of mind I need to know!

just hope I'm not clutching at straws here.

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Original poster
LittleMy34 · 31/01/2008 14:35

By the way just looked at your profile Saggarmakers, so now all is explained about your name. And your DD looks lovely, you must be very proud!

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Original poster
LittleMy34 · 31/01/2008 14:38

Think you may be right there Saggarmakers - if we hadn't found out until our baby was born, there would be no question in our minds, we'd go for the treatment - but given that we do know, and we have the option not to put our baby through all that, it makes it a very different kettle of fish.

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Saggarmakersbottomknocker · 31/01/2008 14:38

Don't you just wish for a magic wand right now? I bet you feel like your head is about to explode with all the questions and emotions rushing around in there.

Oh and an explanation of my name is on my profile.

goingfor3 · 31/01/2008 14:41

Littlemy take as many studies as you feel you need to to show the cardiologist, it's better than always wondering what if I had asked this...

I misscarried my first pregnacy at 20 and delivered my baby about 24 hours after the first contraction. Physically it probably wasn't as intense as a full term labour but mentally it was very painful. I refused pain relief until the last 2 hours or so, if I had had an epidural ealier on it would have been a great help.

Original poster
LittleMy34 · 31/01/2008 14:46

Thanks goingfor3 - the consultant seemed to think with drugs etc that it would be over in a day, but you never know....I don't have any real idea what it might feel like, as DS1 was induced (curse that Syntocinon, it's an evil evil thing) and so I don't know what normal labour feels like.

Saggarmakers - that's exactly what my head feels like - and if you've got one of those magic wands, send it over here!

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Rolf · 31/01/2008 14:46

LittleMy - I don't mind you asking. Yes, I have to have labour induced. They used pessaries and it took a few to get me going, The labour probably took a few hours longer than a normal (induced) labour but was in other respects pretty similar. I think I started feeling twinges around 9pm and delivered my daughter about 8am the following morning.

The main physical difference was the pushing stage - because she was so small, the pushing was easy and not as painful as a normal labour.

I had a morphine pump so I could control my pain relief. It also kept me completely spaced out which was what I wanted.

They also gave me something to prevent my milk coming in.

We had my baby blessed and she is buried with my mother.

I would say that although it seems grotesque to go through a labour in that way, it eventually becomes an important part of the whole grieving process. 4 years on I think that it would have been more shocking to go to sleep with a bump and a baby and wake up with nothing.

My situation was different to yours as my pregnancy was going fine, the baby just died suddently and for no particular reason.

I'll say it once and then keep my mouth shut, as I really don't want to cause you any additional pain, but you sound in your last post as though you are not completely sure. There is not a day that goes by without my thinking of my daughter and for a long time I was overwhelmed with guilt and sadness. It put huge pressure on my whole family and on my marriage. If she had died through a termination I honestly think that it would have destroyed me. If this is the right decision for you and your husband, then so be it, but PLEASE don't allow yourselves to be steered down that path by doctors who will go home afterwards and forget about it. My heart really goes out to you.

I'm really hesitating about hitting Post...

goingfor3 · 31/01/2008 14:53

Littlemy, it will probably be quite similar to your other induced labour just maybe not as intense. The pain relief I had in the end was morphine and I wished I had started it sooner. The dr gave me the higest possible dose and it knocked me out which was what I really needed. I had it a couple of times afterwards too (very sympathtic dr) but I do remeber waking up after the final time wonder where I was as I was really disorientated and what had happened hit me really hard again. It happened 8 years ago and still upsets me.

I second what Rolf says, only do it if you have no doubts.

marina · 31/01/2008 14:53

Rolf, my experiences were so similar to yours, including my feelings afterwards, my heart goes out to you XXX Tom died in utero at 21 weeks

Original poster
LittleMy34 · 31/01/2008 14:56

Thanks for sharing such a painful experience Rolf, and please don't worry about what you said at the end. It's useful to know these things as I do have real concerns about what effect this will have on the whole family. And I think deep down I know what you mean about labour being part of the grieving process - although it might seem easier, I think you're right, it would be strange to go to sleep and wake up with no bump.

My mother suggested considering carrying the baby to term but then not consenting to treatment if he has got HLHS, but I'm not sure I can go through the rest of the pregnancy knowing he is likely to die at the end of it, although I know for some people this is an option.

rock and a hard place.

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nh101andhertwinbeans · 31/01/2008 15:02

It is not really for me to give advice and I don't want to confuse you or make things harder or just be a pain in the bum but I think if you have any kind of inkling that the docs may be wrong (or giving you a worse case scenario that might not happen) then trust your instinct and go on with the pregnancy.

Without the early nuchal scan you'd never have known there was a problem and would have carried on anyway.

I don't think you are clutching at straws - there are hundreds of stories where people are told one thing by docs and then something else happens.

Trust your instincts and you will make the right choice.

Upsidedowncake · 31/01/2008 15:02

Littlemy, I think you are absolutely right to bring any extra reading to the table. I'm sure that the doctors will be used to it, and appreciate what you are doing.

I also think you are very brave. Either decision would be so hard to make for me.

I am thinking of you.

Love

Upsidedown xxx

Rolf · 31/01/2008 15:04

Hi Marina - it's MrsDarcy here.

In the weeks afterwards I remember wishing that I could have some more morphine, and thinking that if I mixed in those sort of circles I would take whatever drug I could to make the pain and sadness go away for a while. It's powerful stuff.

When I was expecting DD a year later, and they found a brain abnormality, we were given a prognosis ranging from "Fine" to "really quite bearable" to "will die in your arms in the delivery room". With most of the conditions diagnosed in utero there are similar gradations of severity, which can't be narrowed down until the baby is born. If your doctors are focusing on one branch of the diagram on which they can mark out the possibilities, they are doing you a disservice.

bundle · 31/01/2008 15:10

gosh mrsdarcy/rolf, what an incredible story

Original poster
LittleMy34 · 31/01/2008 15:38

That is quite something, Rolf - how was your DD in the end?

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Original poster
LittleMy34 · 31/01/2008 15:41

Have just made DP's birthday cake, fingers crossed it rises as I haven't got time to make another one before he gets home! (and I haven't got enough of the flipping complicated ingredients - concentrated apple juice anyone?)

feeling quite proud of achievement.

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Rolf · 31/01/2008 15:54

It was one of those soft markers which can mean anything. It was more definite than just a dodgy-looking measurement - she has a part of her brain missing and it is a soft marker for Edwards' Syndrome. So if she had Edwards the prognosis was stillborn or v ltd life expectancy. If she didn't have Edwards she could have had any degree of learning difficulties, from mild to very severe. Or she could develop normally.

So we were looking at a whole range of possibilities and whilst an amnio could have ruled out Edwards it couldn't rule out learning difficulties. In my panic looked at the worst case scenario, as one does.

She is now 2.5 years old and has been discharged by the neurologist, and is completely normal and wonderful. Her brain has worked out its own route for processing information.

Impressed with your cake efforts, LittleMy

marina · 31/01/2008 16:02

Hello MrsD
How wonderful to hear how well your dd is doing
LittleMy, you are right, it IS a rock and a hard place. We are all thinking of you XXX

marina · 31/01/2008 16:03

Oh and hope your dp has a great birthday and you all enjoy the cake

Original poster
LittleMy34 · 31/01/2008 16:05

That's really good news, Rolf, just shows they don't always know what will happen!

I think we have to face the fact that our baby definitely has got congenital heart disease - it's really about how severe it might be, and that's the bit that's so difficult to predict.

cake rising nicely!

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nh101andhertwinbeans · 31/01/2008 16:59

If you are sure he has heart disease and are sure you couldn't put him through all that then I think your decision to terminate is the right one. I remember the pain I had from only a MMC last year. I was desperate to get PG again to take the pain away so I can ony begin to imagine what the pain will be like for you. But one day you will have happiness again, like Rolf. Just try to focus on that.

Original poster
LittleMy34 · 31/01/2008 17:07

Thanks nh101 - what's a MMC? sorry, haven't caught up with all the acronyms yet!

I do think about getting PG again but at the moment it just feels like I'm betraying the baby to think like that. I think that'll come later.

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goingfor3 · 31/01/2008 18:15

Littlemy, I hope you enjoy your cake tonight!

andiemustlosehalfastonemore · 31/01/2008 18:21

littlemy enjoy the cake

blueshoes · 31/01/2008 18:33

MyLittle, I totally agree that it is very difficult to diagnose the severity antenatally. Dd had a cluster of suspected heart defects (VSD, PDA, coarctation) but it was only after 4 months of continuous scanning and uncertainty after she was born that a senior cardiologist finally decided what was wrong and made the decision to operate asap. But I appreciate my situation is different from yours because even the most serious of potential conditions was still relatively easily fixable. I'm really sorry, I wish you did not have such a difficult decision on your hands.

I agree that the doctors need to not just focus on the worst case scenario but also on the better scenarios. Like someone said, they don't like to give false hope (for liability reasons as well), but they don't carry the emotional weight of the decision, the way you and dh do.

Having said that, they are a good team at Guys/Evelina.

lennygrrl, dd is 4.6 now. She had her surgery at 4 months (then Guys), and we are very lucky in that it seems to have fixed things. How is your dd?