nuchal fold results

[campbella]

Hi,this is my first every pregnancy, I am 34, 12 weeks pregnant with IVF twins, I went for a nuchal scan on tue 4/6/08, baby 1 was 1.3ml and low risk odds 1:1313 baby 2 was 2.0 ml and was high risk with odd 1;168, i had no blood tests taking only this measurement of a scan, I asked for an amnio at 15 weeks but because its twins its double the risk of miscarriage and I could lose both babies, which also could be healthy, does anyone have any advice on what i do from hear? I haven't slept or eaten properly since I had these results, pregnancy is supposed to be a happy time, I so down and all alone.

campbella

There is a charity that offers advise on antenatal screening called ARC. If you phone their helpline - they were very helpful when I had a screening result of 1:50 with my last pg. Not twins though.

In the end we decided not to have any further testing due to the risk of mc. We decided if our baby had downs then we would still love her.

The hospital let us have an appointment to speak with the consultant who carried out the amnios, which we found helpful - could you ask for this?

1:168 actually sounds quite a good result to me... but only know if you need to know for sure.

I thought that 1:50 actually meant that there was 98% chance all was well so yours would be higher than that.

Have the blood tests before you make any other decisions, they will probably dramatically increase baby's odds that there are no abnormalities

Good luck, I have been through it and it is terrifying

Due to the miscarriage risk you also need to think why you are doing the amnio, would you terminate if there was a high risk of chromosomal abnormalities, I am not judging, just pointing out.

I too have had fertility treatment and really do understand

Campbella

Sorry you feel so upset.

What is it that frightens you so much about one child possibly having Down's syndrome? Perhaps if you read up on, or talked to us here, about having a child with DS you might feel better, do you think?

My DD has Down's syndrome. She's sat here now playing with her 2 sisters and it's the perfect family picture, nothing scary about it I promise.

The idea of having a child with DS terrifies people. The reality is totally unterrifying and actually incredibly wonderful.

Charlotte is Charlotte, she's one of 3 daughters. She just happens to have DS. It really is no biggie, and so speaks every parent of a child who has DS.

I'm here to listen/ talk.

It sounds like you need to get more information about this before you decide, and maybe think about how averse you are to the idea of having a child with disabilities.
Your risk from the nuchal isnt actually that high - you have 167:168 that the baby is fine, and i think the risks of losing a normal baby with the amnio are higher than the risk of that baby being affected.
Have you thought about what you would do if you had the amnio and it did prove the child was affected. If it wouldnt change the outcome any way then maybe no point in having the amnio?
If you would want to terminate if the baby did have downs to what extent would that process put the other baby at risk? (I dont know the answer to that, but its something I would want to know before I had the amnio).

thanks everyone for your comments, they have been very helpful, my husband doesn't want us to do anymore testing, and wait until the birth and cross that bridge when we come to it, we have waited so long to get to this stage, I think its the fear of not knowing, you just asume when you go for tests eveything will come back normal and its trying to get over the shock that something could be wrong and what to do next. Can I still get bloods taken for a nuchal if its twins as the place I went was healthcare now and they said I couldn't get bloods done.

campbella

The fear of the unknown is awful Campbella, it really is. But I'm living that unknown right now babes and I'm here if you want to talk about it. I promise you that having a child with DS isn't scary. She is bright, funny, very clever, stubborn as hell, unbelievibly chatty, very caring, slow to learn new skills but gets there, never forgets a name or a face, dishes out unconditional love to her family, she's hard work and worth every second of it. But I could be speaking about any of my daughters when i say that.

She goes to mainstream scool and lovesit. Each child in the class were asked to draw a pic and name their top 2 friends. Out of 20 pupils 18 named Charlotte as one of their 2 friends!

Pictures of her on my profile if you want a peek.

Keep talking.

And massive congratulations on your pregnancy. Please, please try and enjoy this most magical of times and try not to worry.

Campbella, please call arc.

If you have the tests you need to know what you want to to with the results BEFORE.

I have worked with a client who had a baby with DS. After the initial 'shock' wore off - nothing changed. They loved their son just like an other parent - even more so if you were to see them.

Thomcats advice is great (her children are gorgeous!) and please speak to her - even 'off board' if you can, as she has been where you are.

My story is that at 20 weeks and a referral to the FMC to see a fetal cardiologist - our dd1 was diagnosed with a complete avsd. We were also told if she was born without Down syndrome it would be very very rare. We chose not to have an amnio as it would not make a difference for us. This was our daughter and she would be born. Both of us had examples in our lives of families who had members with down syndrome and were doing fine. We have since learnt on paper our chance was around 1 in 5. She was born almost 6 years ago with down syndrome. At 8 weeks old she underwent two open heart surgeries and after a rocky recovery period has gone from strength to strength.

She is currently attending a mainstream school 3 ( soon to be 4) days a week and attends a special ed unit 2 ( soon to be 1) day a week. At mainstream - every child in her year knows her. In her class they fight to sit next to her, to have her work with them.

I have written loads about dd1. There are tough times but they are far outweighed by the good times. Her sheer determination and amazing personality have won her many friends and admirers.

She is just gorgeous. She is an adored big sister ( from dd2 and 3).

I could rave forever about her ( and her sisters.) Think there are still some pics attached to my profile.

The hardest thing about being dd1's mother - ignorance of others who cannot see past a label to the amazing person beneath. To those people who either believe that my daughter has no place in this world or should not have been born. To see those people who in 2008 have still not got the idea that people with special needs are just as valuable to this collective we call society.

Campbella - I am sorry you are so worried. I am no expert but I don't think you can have the blood test with twins - scheck with ARC though.

I am 14 weeks pregnant and my baby has just had a nuchal measurement of 3.1mm. However with the blood test my risk factor went down to 1 in 5500 - so the risk of a large nuchal meansurement can be brought down considerably with the blood results.

Where do you live? We are in London and went to the Fetal Medicine Centre in Harley Street. They do a lot of other measurements with the nuchal scan to get a good idea of your Downs risk. For example they meaure the length of the nasal bone, the curvature of the face, they examine the heart valves carefully. All those measurements could be done with twins. They could give you a more accurate risk assessment if you want on. It costs £150 and hass to be donw before 13 weeks and 3 days.

thanks tomcat and eidsvold your daughters sound adorable, I had a great aunt with DS and also a cousin, I know how much pleasure and love they gave to me, I think for me its just the unknowing that something could be wrong and trying to get all the facts first.

I live in scotland so I don't know if we have any FMC clinics in scotland, but it sounds as if the FMC clinic was a lot more imdepth than the clinic i went to she took my age, weight and scanned both babies and took only the nuchal fold measurement she didnt even mension the length of the nasal bone, the cost doesn't bother me as we had to pay 230 for the nuchal scan we got.

thanks again for all your comments, they have helped me lots.

campbella

It's also worth thinking that the opportunities that were open to your cousion and aunt have improved tenfold. Things are so different today and they are getting better and better all the time.

I'm always around if you need to talk more.

Love TC x