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Discussion Starter · #1 ·
Hi ladies

I had my nuchal scan on Friday last week when we were told that one of our babies has a Tricuspid Regurgitation which is leakage through the Tricuspid valve in the heart.  Apparently this can be an early sign of a chromosome abnormalities (Down Sydrome).  Has anyone else had the same outcome at the 12 week scan?  And if some, what did you do?  At this stage, we have decided against a CVS due to the risk of miscarriage and the fact that I could also end up miscarrying the other twin.   

Would really appreciate any comments from others who have been in a similar position.

Many thanks
Beanie
 

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Hi Beanie,

I'm so sorry, why can't things ever go easily? I take it you've googled Tricuspid Regurgutation? What were the medical staff saying about it? I've not heard of it myself before.

We decided against getting any of the tests done, we have our 20 week scan in two weeks and suppose we will find out then if anything is wrong.

Fingers crossed for you.

Weezy
 

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Beanie - I can't give you any direct advice but have you contacted Antenatal Results and Choices? They may be able to help you decide what tests you want to have? www.arc-uk.org

Has your Consultant offered you an earlier scan than 20 weeks to take another look at the babies heart?
Sending you a huge ^hugme^

Deb
 

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Discussion Starter · #4 ·
Thanks for your replies.

Charlies-mum - I was thinking of contacting them but not sure if there is anything we can do at this stage anyway.  I may give them a call in the next few days for a chat.  The consultant has advised us to come back again at 16 weeks as they will be able to see if it's improved or got any worse.  ^pray^  BTW, I see that you have had a natural BFP, many many congratulations - you must be over the moon  ^afro^

Weezy, yes I have done some research on the net but have only discovered what the consultant told us really (which is why I was hoping that someone on here would have had a similar experience that they could share with me).  In some cases it can rectify itself but it others it is the first sign of a chromosome abnormality.  :-\  Wishing you lots of luck for your 20 week scan  ^reiki^

xx
 

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Hi

Im sorry to hear you had this news, my DS didnt have the same but was diagnosed at 20 weeks with heart problem (transposition of great arteries) my local hosp referred me straight away and i was seen at the same week in Guys for a clearer scan. Guys offered to scan any future pg for me and did a 14 week scan for my second DS and then again at 18? weeks for a clearer picture, i hope this helps can you push to be referred to a specialist or have u already done this?

Have u also tried the fetal medicine centre harley st london they do blood tests and amnios which i think carry a lower risk of m/c?

i really hope u get some more advice/answers hun and that fingers crossed it clears up by itself I really do understand what an enormous shock it is to hear news like this after the elation of finding out you are pg. Hun if u need to chat pm me any time ^hugme^

Hugs and best wishes ^reiki^ ^reiki^ ^reiki^
Mani
 

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Hi there

My DD has Downs Syndrome and was born with a congenital heart defect (Ventricular Septal Defect aka hole in the heart) and we are going into the Royal Brompton tomorrow for her to undergo surgery to repair it.  I have got a lot of useful info from a site called Heartline.  It's like FF but for parents and relatives of children with congenital heart defects, and there's a thread for expectant mothers as well.  I'm sure you will find people there whose children have had the same problem and who can tell you what would be involved if you went on to have the baby.  There's also a good explanation, with diagrams, of most congenital heart defects on the Childrens Heart Federation site.  I'm no good at doing links but I'm sure you can get to them both via Google.

We chose not to do any testing because I got PG on our last go of IVF and so didn't want to do anything which could put the pregnancy at risk.  We decided not to go for the high/low risk test either because that doesn't tell you for definite (and if I had got a high risk result then, I would have spent a lot of time agonising over whether to do the amnio etc) so we only found out about the Downs when Lizzie was born.  My feeling so far is that Downs is not the end of the world, and Lizzie is a lovely baby, although I am disappointed that we won;t be able to have a 'normal' child.  If you want to know more, please ask, although we will be away for the next week or so at the Brompton.

I hope you are able to find the info you need on heartline, and I wish you well with deciding what to do.  It's not easy....

All the best
Essex Girl x
 

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Discussion Starter · #9 ·
Ladies

Thank you all so much for your replies.  I shall do some more investigating (thank you for the relevant web links).

We had our nuchal at the FMC so had the blood test.  We will see what the outcome is after our 16 week scan and decide whether we should risk an amnios at this point.

Thanks again for all your support - it means a lot

xx
 

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Hi Beanie

We have just come back from a week at the Royal Brompton Hosp where Lizzie had her hole in the heart closed.  Her problem was fairly straightforward, but it was eye-opening to see what they can do now.  There were children in there having valves replaced, and my impression was that this is a fairly 'mainstream' heart problem and treatable, though obviously you should ask the experts youself.  As your LO's heart problem has been diagnosed already, have you been referred to a paediatric cardiac specialist?  If not, I would ask for this, as they will be able to tell you what would be involved in the way of surgery (I think they have to replace artifical valves from time to time as the child grows) and how it would affect your child's day to day life.

If I can help with anything else, please feel free to IM me.

Lizzie had her op last Friday as planned.  They said babies recover quickly from surgery, and by Tuesday she was rolling around in her cot and smiling at everyone (even the doctor who came to take her blood test got a smile....!).  Surgery isn't pleasant, but if she had to go through another op, I wouldn't worry quite so much the next time.

Good luck
Essex Girl x
 

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Discussion Starter · #11 ·
Hi Essex Girl

I'm so glad to hear that Lizzie is doing well - it really is amazing how quickly babies recover.  I was told that the condition our LO has will not require any surgery when it is born - it is just an early indication of Downs.  We've got another scan in just over a week so should find out a bit more then.  If the condition is still there then I think I will take your advice and ask to be referred to a paediatric cardiac specialist as it would be good to understand the condition a little more. 

Really appreciate your message and am so pleased that all is going well with Lizzie - she is a little sweetie  :-*

I'm glad the worry is over and hopefully Lizzie won't need any more surgery  ^pray^

Thanks again for taking the time to send me a message.  :-*

Beanie xxx
 

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Hi Beanie hope you dont mind me asking how you have got on with further scans on your baby  with tricuspid regurgitation , i found out my baby too has that and am reaaly worried , thanks in advance .
Trueblue
 

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Discussion Starter · #13 ·
Sorry Trueblue, I have only just seen your message.

My 16 and 20 week scan showed that the condition had rectified itself.  Apparently it does in around 95% of cases. I will PM you.

Beanie

 

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Discussion Starter · #15 ·
Thanks Mani, we're still very nervous but delighted that things seem to have improved  (if that makes sense)  ^idiot^.

Well done on your weight loss!!  ^clapping^
 

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Discussion Starter · #17 ·
Ah bless him - that must have been so hard for you all.  I hope he has made a full recovery  :-*

Thank you Mani.
 
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