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Discussion Starter · #1 ·
Hello I am 17 weeks pregnant (I will be 18 weeks on Sunday). I had my nuchul trans test at 13 weeks and 4 days. My result was a measurement of 1.8 (in brackets next to the result it said 'normal' 2.7). I don't live in the UK anymore altough I am British. I live in France. However at the scan and after I was not given a risk factor (I.e a percentage or ratio score etc) but just told everything was fine and not to worry.
I had my triple test or Trisomie 21 as it is called here last Wednesday and my doctor called on Friday to say he needed to speak to me. My result was not good from the blood test and that I should have a Amino as soon as possible. I am booked in for it on Monday! Not much time for thought but I am obviously very very upset and scared of the likelihood of having a miscarriage because of the amino (altough I believe it is low 1:200) however this seems more likely than my result of the bloods at 1.238. Also the major upset of having to consider termination if I am having a handicapped child. I already have a healthy 3 year and that can be challenging at times. Altough I know I am very very lucky.
I conceived with IUI on the 2nd attempt after trying for over a year. I am just so scared of what to do. I am in the middle of making an appointment to come back to the UK to see a private hospital in london but wanted some advice in between to calm my nerves and stop me crying.
I just feel that I am being rushed into the amino without having time to think about it. On monday when it is due I will be 18 weeks and one day.
So worried about a miscarriage. I wonder if I delay the test by a further few weeks until I have had my big 20 week scan if the baby would be less likely to miscarry as it would be bigger and I will also have more time to get my head around it. I am know it is important to find out how the baby is as decisions have to be made. I am not avoiding finding out the truth but scared of miscarriage after taking so long to get pregnant.
Please help me.
 

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So sorry you are having such a horrible time when you should be at your happiest.
If they have suggested an amnio, then I am sure it is in your best interests as it is not a procedure done just for the hell of it. Have you tried to contact the Downs syndrome society. I think they have a website and am sure it would show a contact number you could ring and get advice from.
Will have a look for you and write again.
Best wishes,

Ruth
 

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Scarlett, the website is www.downs-syndrome.org.uk and the contact number is 0845 230 0372.
They will be able to put you in touch with someone to talk these issues through with and can help explain what timescale you need to think to.

Ruth
 

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Hi scarlet

I'm not a nurse but the only way of knowing for sure is to have the amnio and like has been said they wouldn't suggest it lightly. Make sure they are aware just how precious this baby is to you.

you of course don't have to have it ,but then have to accept the risk that there may be a problem.
The blood result is not a definate diagnosis but only gives you a probability.

I really feel for you as we are all aware just how precious your pregnancy is. I would talk to the above society and find out about the percentages.

Good luck. I hope everything works out for you.

Mxx
 

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Hi Scarlett,

I have also posted this reply on the IUI girls thread. 

I know it must be really difficult to think about what you would do if the results showed that the baby had Down's Syndrome but some people feel very strongly one way or the other and, if you know you would proceed with the pregnancy even if the baby had Down's, then you don't have to have the test.

There is an organisation called Antenatal Results and Choices whose helpline is open weekdays 10am to 5pm.  I have just looked up their service and it says they offer "support and information for parents during antenatal screening and testing, whilst awaiting results and through to a possible diagnosis".  It says they will support you whatever decisions you make.  They might be able to offer you some support and help interpreting the risks.  Their number is 020 7631 0285 and their website is www.arc-uk.org


I'll think about you.  Let us know how you are.

Victoria
xxx
 

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HI Scarlett,,

I just wanted to post my own experiences on this to maybe help you at this traumatic time.

When carrying Daniel I had the blood tests and my results came back as 1:64 chance of the baby having Downs.  I too went through the do we don't we have the amnio, but also felt we were being pushed (ultimately it is your choice though).  We did decide to go for it as the risk was so high, but not without a lot of heartache over what would we do in the event of M/C or the baby having downs. 

I had the Amnio and spent the next 12 hours analysing every niggle, but that was it, the procedure itself wasn't too bad.  The worse bit was waiting 3 weeks to get the results back.  Luckily in my case they came back fine, and Daniel is now a very healthy 6 year old.

Please forgive me if I have scared you or added to the worry in anyway, I just wanted to let you know how it went for me.  We decided on going for it so we knew either way and could be prepared should the results have been different.  I was on Clomid when I conceived Daniel, and was told by my MW it could've been the hormones that gave the blood results I got.

Ok now I'm waffling.

I know this is a very hard time for you at the moment, I remember it like it was yesterday, so if you need a bit of moral support or would like to know anymore about how it was for me, I'd be happy to offer a shoulder to cry on.

I wish you all the best, and hope that it is a false alarm for you too.

Take care

Emma xx
 

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Scarlett
I would echo what some others have said - only have the amnio if you think you might not want to continue with the pg if it was going to be a Downs baby. Very, very difficult decision to make - it's a huge gamble either way.

The other thing to consider if you delay the amnio is that although it might reduce the risk of miscarriage (I don't know if that's the case or not), it might also make it even harder for you to make any tough decisions as the baby will be older and more developed.

I wish you loads of luck with whatever you decide. Trust your instincts and try not to get pushed into anything you're not happy with.
^reiki^ ^reiki^ ^reiki^
love morgan xx
 

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Discussion Starter · #8 ·
hello everyone. thanks for all your advice, information and support. I decided against the amino. I just could not go through with it. Partly I felt too pushed and too rushed. Instead I went to Harely Street to Professor Nikolaides private clinice.
They looked at my 13 week scan from France, my triple test (trisomie 21) and did a feotal anomoly scan yesterday. I told them of my fears of miscarriage with the amino and my uncertainty if I could go through with a termination.
They put all the information together (and assuming my nuchal fold scan at 13 weeks was carried out correctly) I am now at a risk of 1.1500! a major difference to my measley 1.238 as first told here in France. It is because they calculate your risk factor by the 16 week blood test and don't combine it with the nuchal fold scan which for me was very good. Anyway I am going back in 3 weeks for full anomoly scan when I am 21 weeks and if there is anthing showing up as a problem them they can re-assess me for the amino if I want to go ahead and I can have it done on the same day and have the results of the common problems within 4 days and the rarer ones in 2 weeks. It sounds like a much better option plus it gives me more time to think about what  I want to do.
I would definately rec'd going there to anyone. It is not cheap but for me personally it was worth every single penny. I love my unborn child. I can't bear the thought of losing my baby but I am admittedly scared of going through the pain still of a baby with 'problems'. However I am in a much better position now.
I even know the sex but that is a secret but I am very very pleased.x I originally did not want to know as I wanted a surprise but I think I have had enough of them and also I realise now that the sex does not matter as all. I know we all say it but as long as it is healthy.....that statement is so true. Now I can bond with my little one even more and imagine our lives ahead.
Thank you again everyone.
I am glad I did not rush into the amino it just did'nt feel right.
 
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