congenital heart defect 23wks pregnant, amnio, miscarriage/termination q

[manitz]

Yesterday they did the anomoly scan and could only see two chambers of the heart and diagnosed and VSD. am being referred for a cardiac scan and amnio.

it seems from my reading that there is a 5% chance of a chromosonal abnormality of which it seems edwards syndrome is the worst. 95% chance that it is a heart defect without chromosone issues and it seems that amnio has a 1% chance of miscarriage.

I feel that I can cope with a child that has some quality of life, ie an operable heart issue or downs or ok but that I would terminate a child with edwards. Does anyone have any experience of
a) amnio - what causes the miscarriages?
b) miscarriage this late pg
c) termination at this point in pg?
d) VSD heart defect?

I would be really grateful for any advice as I want to go into my first appointment next monday as well informed as possible.

hi manitz, my dd2 was born with a v. large VSD and Down's syndrome. The VSD was repaired when she was 7 weeks old. It was of course no picnic and she was unlucky and ended up with lots of complications post-op, the first six months of her life were hard on us all.

However.. and this is a big however .. this undoubtedly stressful time is completely and utterly behind us (and has been for many years now - she is 6). Thankfully a VSD is one of those defects that can be fully repaired. Her heart is as good as a normal one, she has no murmur and does not need prophylactic antibiotics before seeing the dentist or anything. She's due to see the cardiologist when she is 8 for the last time (last saw him 2 years ago).

(it was nice to read a post from someone who doesn't think DS is the end of the world - dd2 is a little sunshine and doing well at m/s primary. We wouldn't be without her.)

Manitz, I've replied to your CAT.
And am just at ejb1976's gorgeous little dd

I've just replied too, Manitz.

Hi Manitz

I'm sorry you are going through this. I have a VSD, it was discovered when I was two and it only popped up again recently when I was pregnant. It can be operated on (and would be these days) but when I was born 30 odd years ago they just prescribed lots of exercise.

I know you must be going through a really scary time at the minute but do hold onto the fact that they can do wonders these days with heart surgery and sometimes once the babies are born, the problem is less serious than it appeared.

Good luck.

hi again, sorry for not replying earlier have only just managed to get a to a computer as library was full. prob wont get a chance to post again b4 monday but will let you know how the scan goes. Thanks for everyones good wishes and advice in the meantime.

Saggars thanks for the links. avsd looks particularly scary with all that purple but the stories help - my family (spesh the males) have been very pro termination if there is a hint of a problem, ie dont want a kid who spends all it's time in hospital etc etc. will show them that's not necessarily so via the stories and info I've received.

Geekgirl I might be being a bit blase about downs but I had a friend at school whos older brother had it and there was a hall down our road which was used as a social club we used to go quite a lot. presumably there are levels and degrees to which people are affected but her bro etc all seemed to have a good life. I'm not totally sure how the mental side is affected but I presume m/s means mainstream? what will you do for a secondary, do you think she will be ok in a mainstream secondary or will you look for a more specialist school? I just assumed it would be a specialist school. Bit silly to be asking those questions now as I don't even know if that will be an issue for us but I keep working through the possibilities in my head. glad to hear you are through the stressful time it sounds very much over if it's last visit to cardiologist.

Thanks chocolate. I sort of feel if its just a vsd I'll be celebrating. Seems the best outcome at the moment - well apart from last radiologist being a moron and unable to see what's clearly a very healthy heart - can but hope!

Manitz - sorry - didn't wish to scare you - I have this need for info in this sort of situation and forget that not everyone does it that way

Hope the scan goes well. Hopefully there'll be no need for the amnio.

Miscarriage following Amnio: I think this is usually caused by infection, in spite of all precautions they take, the uterus is ultra sensitive to any foreign material/bacteria.

saggars, didn't mean I don't want it - I am also totally like that - it's just the purple animation, am v crap at biology.

I'm extremely calm and told a couple of friends/acquaintances today had to comfort them! Im sure I will get upset if the worst happens but through arranging my own appointment at guys and reading all the info I've found and others have given me - and support (even if it is my pessimistic dad) from family I feel totally prepared for any eventuality now. like to be informed and in control.

Hello - whilst I have no experience of Edwards, I have had some cardiac exp recently; my DS has a VSD which is under ongoing observation but has not impacted on his life in any real way so far - and am currently pregnant with DC2 so was refered to the fetal cardiac unit at St Thomas'/Guys (in the Evalina Children's hospital) - as was a friend of mine who is also pregnant and has been given the same diagnosis as you (she had the amnio and got an all clear, but her baby will be born with 2 chambers - they will scan on delivery and decide when to operate at that point) Anyway - this was really just to say that both her and my experience of the Evalina was amazing - these people really can work wonders, are SO passionate and committed to children's cardiac care and are total experts in their fields. I really hope you have the same experience there and come away feeling as reassured as we both did. Tough time for you but you'll be amazed how resilient you'll be able to be. take good care

oh yes - I was clueless about the heart before dd was born - no science 'O' levels. Very steep learning curve. Information is power, I think.

I've heard fab things about the new Evelina hospital too.

Nellie - point your friend here. She'll find loads of support on the pregnant mums board. Good luck to you both.

manitz, you sound so calm.

My pregnancy with dd was so super stressful. My 13 week scan showed soft markers for Edwards (choroid plexus cysts) and dd was generally small. She also had a heart defect, the extent of which they could not tell with certainty from the scans. After she was born and they were able to get a better look at her heart, it turned out she had a patent ductus arteriosis (a blood vessel which should have closed at birth did not) and a big VSD - which was surgically corrected at Guys at 6 months. Dd is absolutely normal now (still small, but that is her physiology) and the early issues are so behind us and do not form any part of our lives.

Two things: for the Edwards, like you, I would have considered a termination if that was confirmed because Edwards babies often don't make it to term or die within a few days of birth. The doctors assumed I would have an amnio (it was actually a CVS as I was 13 weeks) and booked one the next day. I was so dazed I went for it (1% risk). It turned out fine and they ruled out Edwards. Someone asked me to look at the risk this way. Imagine a room with 100 children - what are the chances you would pick out the one out of the 100?

For the heart condition, get experts to look at it using the best machines possible. So that you know as close as possible as early as possible what the condition is (but bear in mind that they may not be able to diagnose for certain until after the birth). That way, you will know whether it is operable and if so, how many operations are needed and whether it is a life limiting condition. I highly recommend a referral to Kings Hospital, Harris Birthright. They were the ones who spotted my dd's condition by chance. No other scanners or machines were able to even pick out my dd's condition except the ones at Kings.

Sorry I now have to rush off to put ds to bed. Please ask me as many questions as you want. I will reply tomorrow first thing. Please take care. Will pray for you and your baby.

Hi my 20 week scan showed soft markers for Edwards (choroid plexus cysts). Prior to that every test had been fine so you can imagine how shocked we were. I was referred for a more detailed scan at a different hospital. The consultant was able to rule out Edwards from the scan as dd's heart was OK and all bones and feet OK too. Because of that we didn't go for the amnio as consultant said the risk of something being wrong was less than the 1% risk of miscarriage IYSWIM. DD is fine. Just posting this as it may be possible to find out more from further more detailed scans rather than having an amnio. Hope you are OK.

Hi there. We had the scan at the evalina and it showed something similar to left heart hypoplasty but slightly more complex apparently. It's the right side which exists for instance.

We have decided to have a termination though I'm doing a bit more final research today to make the final decision. The consultant said that on a seriousness scale of one-10 it's a ten. He can do some palliative surgery at 1 week, 6m 2 and 4 ish followed by a heart transplant when the child reaches 10-15. The surgery would be norton and fontal (I think) and would have about a 50-60% chance of survival.

Overall this is too serious for me. I can't cope with this much time in hospital and this much risk to my child. In addition I can't cope with it for my other children who would be at grannies for a large part of this time. Finally the transplant really decides it for me.

Nellieloula it sounds a bit like your friend has a similar diagnosis to my baby. I really admire her bravery to go ahead with this and I wish her loads of luck. I am sorry I can't do it as I didn't ever think I would make this decision b4 I had children.

Thanks for the help with the Edwards Pinkteddy and Blueshoes. In teh circumstances my fears about amnio are irrelevant, based on the ecg we are faced with enough of a challenge and the dr said this isn't a common chd found with chromosonal abnormalities. I think we will get a final test later to give us more info for any future children but it's likely this will be clear.

manitz - I have been reasding your thread, but not poting as I have no useful experience or advice.

But my heart goes out to you.

Thinking of you Manitz

xxxx

sorry manitz

FWIW, when dd2 had her heart repaired her bed neighbour in the high dependency unit was a newborn baby girl with HLHS - she died during the first surgery it's such a bad defect and I completely understand your decision.

for you

xx

Manitz
My heart goes out to your and your family.

Manitz, I'm so sorry

my friend's baby who died had a left hypoplastic heart, his aorta was one of the smallest the surgeon had tried to work on but sadly he died a few days after the one week surgery (he hadn't been diagnosed ante natally, about 10% of babies are missed) so he did have one lovely week at home with his family.

please say if there's anything we can do. much love to you & your family, xxxx

so sorry manitz

Dear Manitz, I cannot tell you how sorry I am to hear this terrible news .
I have mailed you not long ago with the replies to your questions. I wish with all my heart you did not need to read any of them. XXX

Hi manitz, so so sorry

I lost my son at 24 weeks due to prematurity, so I log onto the sands forum sometimes - www.sandsforum.org. There are many mums on there that have terminated due to severe medical reasons, so just thought you might want the details in case you wanted to talk to anyone else that has similar experiences.

We had to make choices with our little one, its so hard but you have to do what is right for your child and your family. We decided to turn off his ventilator when he had little chance of a quality life. Its such a hard decision, so sorry you are going through this.

Hi thanks everybody for all the thoughts coming my way.

Marina Have emailed you back, thank you very much for your help. Rahrah, didn't realise sands still existed and am just about to log off but will have a look atnother day when I can get to a computer. I have been emailing nerdmagnet and marina and it has been a great help.

this is such a hard decision to make. I kow we are being wimps but our life is so good at the moment and our kids so happy that to bring such suffering in knowingly just seems the wrong thing to do.

I've been looking atht lhm website and so many people seem to have fairly good results that it does give me some doubts but I know I won't suffer as much this way, although that's a decision I'm making for my child, I also wouldn't them to either. Im having the odd doubt but the surgery seems so severe that I think this will be the ultimate decision.

Thanks again.
M

I don't think you are being a wimp.
I think you are being brave.