11-13 weeks scan at the Fetal Medicine Centre

babyMy first two babies were born in London.  Even though I had both of them through the National Health Service system, I went to the Fetal Medicine Centre (FMC), a private clinic on Harley Street in London, for the 11-13 week scans.  Reason is, the founder of the FMC is Professor Kypros Nicolaides, the world’s authority on fetal medicine and the person who discovered the relationship between Down Sydrome and the measurement of the nuchal translucency!
Since I was exactly 12 weeks pregnant when we met with the girls in London a few weeks ago, I decided that this little baby also had to receive the test of all tests at the place of all places.  And it was fabulous to see that little person happily moving around inside of me!
Everything looked absolutely perfect at the scan, BUT (and here’s the but!) I was told that the nasal bone of this little 12-week-old creature was on the small side.  Not non-existent, but small.  And, I was told, a non-existent, or very small nasal bone is one of the soft markers for Down syndrome.  However, since the rest of the rest of the test was good, and the results of the blood test were fine, the overall chance of a chromosomal disorder was still considered small.

For my first two babies the test results were excellent.  Of course, we’re still talking percentages, so it doesn’t give any real security, but the chance of something being wrong was so absolutely marginal, there was no need to worry.  For this baby, the results are still very good, but there was a but.  And the but made me worry.

At 15 weeks, I asked for an extensive scan here in Amsterdam, to look for any symptons of a chromosomal disorder, as far as detectable at this stage of the pregnancy.  The doctor found nothing.  She measured the nasal bone, and however on the small side, it was within the normal range.
At 15 weeks you can choose to have amniocentesis.  The chance of miscarrying after an amnio is somewhere between 1 in 100 and 1 in 300.  The chance that my baby has a disorder is 1 in 700, as they told me after the test in the FMC in London.  I’m 36 years old.  I decided not to have an amnio.

Did you have a decision to make?  Did you have an amnio??

xxx Esther

P.S. Picture of my scan in Amsterdam.  Baby is beautiful, isn’t he/she??

23 COMMENTS - Add your own

1. Urbanmums London | December 18, 2009 | Reply

My second baby (now 18 months) had a soft marker for down’s too. He had low levels of fluid in the brain. It was marginally low, but enough that they had me keep coming back for scans throughout my pregnancy (it was NHS, though UCL–they were fantastic).

I chose not to have an amnio, because I felt the risk was not worth knowing the results (which i think would still only be a more accurate percentage ? ). My little boy has no signs of downs, but we do go back for periodical tests (after he was born, at 1 yr and then at 2yr) so they can add him to their research. The tests are non-obtrusive and involve watching him play, asking him to complete a series of tasks, etc. It aids their research and I feel like it’s my way of helping the cause!

Congrats on your pregnancy! Sounds like the second scan went well and hopefully put you at ease. :) No matter how small the chances are of something, it is always worrying!

2. Wibke | December 18, 2009 | Reply

I so understand your worries! I am six months pregnant with our first, and was ever so relieved when the first scan gave absolutely no reason to worry and the second confirmed this.
So I did not have to seriously think about the amnio, but would have been very divided as well. And then there is the question that follows it: If the results point towards Down syndrome, would you decide to have an abortion? I don’t know how I/we would decide in a situation like this…

Anyway, I keep my fingers crossed for you and the baby, and yes, the scan is beatiful!

3. Silvia bogni | December 18, 2009 | Reply

Three friends of mine had a very worrying result from the nuchal translucency and they decided to have an amniocentesis to get a proper answer. All of them had lots of problems after the amnio, so much that one of them spent almost the rest of the pregnancy in bed. Now, all the babies are born and fine. Talking to them about it they say they won’t do the same thing if they were pregnant again. I agree the scan is gorgeous. Silvia

4. Silvia Magni - Milan | December 18, 2009 | Reply

I had amniocentesis for my second pregnancy because I was 37 and I was only very worried for my advanced age.
The test was good (thank god) and I DIDN’T HAVE ANY PROBLEM AT ALL after the test!
I would do the test again if I would found myself pregnant again.. which I wouldn’t hope, two are enough for me!
The decision is totally up to you no matter how many experiences you hear about it..!
Good luck!
Silvia

5. Cat | December 18, 2009 | Reply

I was pregnant with my daughter (now 19mos) at 35, so they pressured me with the usual barrage of tests (in Montreal). I opted only for ultrasounds. Because she looked fine in the ultras, I knew that no matter what the outcome of chromosomal testing might be, I would have and love the baby, so really the risk to her wasn’t worth it. I admit, I was nervous. I had dreams that there was something wrong with her. But I did my best not to let it take over my experience and she turned out to be the most perfect little human I’ve ever met. Phew! Three cheers to all you “older” mums out there!!!

6. Cat | December 18, 2009 | Reply

And of course, CONGRATULATIONS, Esther! Best wishes!!! xx

7. gabrielle | December 18, 2009 | Reply

oh god that is horrible you poor thing. i think i’m just about as pregnant as you and have my own horror story. we went for the usual combination test that they do in holland and the result was terrible concluding that i was at a reasonable risk. i came home shocked and started some research. two days later and a bit more cognizant of the way it all works i called the doctor to ask for each of the individual results that feed into the combination result so i could make a decision from there. during that phone call i got a “whoops. it seems that these figures were not entered correctly.” two more zeros were added to my risk levels! so despite my hefty age – ;) – i wasn’t really at risk. i should add that this is the same doctor who told me for nine months that my little boy was in fact going to be a little girl – poor kid had a wardrobe full of pink dresses for the first year of his life. all is good in the end. congratulations and best wishes. that scan looks like a boy to me :)

8. Dina | December 18, 2009 | Reply

One of my girls had a “soft marker” for downs as well based on one of her hand measurements. It was scary but I decided not to have the amnio as I did not want to take any chances with a twin pregnancy. Chances are if there is an abnormality there will be more than one marker. I think it’s great what technology can do these days in terms of tracking a pregnancy – the downside is that things are totally mirco managed and pick up way too much. just about everyone I know was told something at one of their scans that caused worry – baby was too small/big, baby had brain fluid, baby had soft marker – you name it.

9. Courtney | December 18, 2009 | Reply

My second child had Choroid Plexus Cysts (CPCs) in his brain when we went for the 20-week scan. This is a marker for major chromosomal abnormalities like Trisomy 13 and others. It was incredibly stressful and scary. And of course I went straight home and got on the internet to do my own ‘research’… which made me even more scared and confused!!
They told us that only 1 in 20 babies who have CPCs end up having a chromosomal disorder… but still this is a scary percentage and you only focus on the negative, rather than the positive.
We ended up not having an amnio because we met with Professor Nicolaides (at the Fetal Medicine Centre) and he advised us not to, based on the fact that the baby showed absolutely no other signs of having anything wrong.
Today that baby is a super healthy 2-year-old with absolutely no issues at all.

I think, looking back at it all, that it modern medicine and scans are so impressive nowadays, and they really look at every detail of your baby. It’s good that they check everything… but in a way, it does add the extra (and unnecessary) stress!

10. Carol | December 18, 2009 | Reply

Hi,
I had two scans in the Fetal Medicine Centre (FMC) and the results were fine. But We had decided before go there, that if the results were not good, the next step it will be amnio. I was 37 and it was y first baby, so i was a bit paranoiac I had my baby with NHS as well.
All the best for you

11. Carmen | December 18, 2009 | Reply

My markers for cleft spine went wrong in my first pregnancy and I took a special ultrasound but I was only 30 then. With the other two, since the ultrasound and the combined studies showed normal results, I did not have to face the amnio issue. I guess that the almost clean opinion of two doctors should be enough. Good luck ,

Carmen

12. Joan | December 19, 2009 | Reply

I had a worrisome nuchal translucency along with worrisome blood work. In all, they gave me a 1:31 chance of chromosomal abnormality. I was 28 years old, perfectly healthy, no family history. I opted for the amnio to know what we were dealing with and it came back completely normal. Now, 2 years later we are loving every minute with our healthy little girl! The rates of false positives with these ultra-sensitive tests are so high. I wouldn’t worry, just enjoy the pregnancy!!!

I will say however, that those weeks were some of the hardest that my husband and I have had to endure, did bring us closer though! All the best!

13. María | December 19, 2009 | Reply

Your baby is full of live, even he has a chance of chromosomal abnormality!!!

I´m pregnat and my husband and me didn´t want to make an amnio, because of the risk of miscarrying and because we love our little first boy (even he was healthy or not). At the moment everything is going well (33 weeks).

Your baby is beautifull, congratulations!

14. Amicacarmilla | December 19, 2009 | Reply

Thanks for sharing such personal experiences.

Good Luck!

The baby looks so peaceful and calming.

15. Nest | December 19, 2009 | Reply

Be STRONGGGGGG like a super woman! think everithing is running ok, Share this emotions is nice!
Luck for u

16. Sonia | December 19, 2009 | Reply

Hi Esther, thanks for sharing this with us, I can imagine you are worried about the whole thing. I do not know if it helps but I think your baby is and will be absolutely gorgeous !! It looks so full of life in that scan !

My sister in law had also several test and they were always finding something, or the femur was not long enough (nothing abnormal but on the small side) and the measurements for the nuchal translucency were also on the range that brings a little doubt…
She delivered a perfect baby but had a very stressful and not very happy pregnancy… just for nothing !!

Myself I never had an amnio because I knew that even if the results were showing that the baby was not 100% OK I was not going to be able to do anything with that piece of information. It was already my baby, we wanted him of her as he or she was, perfect or not.

I wish you all the luck and strenght !!!

17. Musetta | December 20, 2009 | Reply

I told you in our email contact already: Congrats on your third baby on the way!!!

I got a third on the way too. I never had the 13 weeks screening. Just regular u/s to determine the length of pregnancy, but nothing more than that. But, my second was diagnosed with double cleft palate at the 20 weeks u/s. They asked us whether we wanted to get further investigation into his chromosomes. We refused. They also asked us whether we would want to consider abortion. We refused that too. Reason: the baby was welcome and we would adapt. I was very happy that I knew about the birth defact. We could prepare and make sure that all the right care would be available after his birth. Why we did not go for the punction? Because there would have been risks to our son. 2% of all punctions cause miscarriages, we did not want to take that risk…

18. paula | December 21, 2009 | Reply

Hi,

I had my first baby at 41 years old and opted for amnio. My husband and I wanted definite information about whether we would be facing significant chromosomal defects. It was quite painful while it was happening but there were no aftereffects at all and we enjoyed the certainty (about at least one set of possible problems).

19. Esther | December 21, 2009 | Reply

Thank you so much for all of your comments!
I think it is so true, that thanks to technology we have better chances to predict if something is terribly wrong with the baby, but we also have bigger chances to worry ourselves crazy!
Like some of you said, this baby is already ours. Even if it has something wrong with it, we will love it…
It’s good to read all of your positive thoughts….!

20. Emilie | December 21, 2009 | Reply

I still remember Courtney coming over to stay with me in Paris after her scan and she was so worried about the results… in the end all was fine. Modern technology is great, but sometimes give you so much information that you don’t know what to do with it. Especially as a lay person!

21. Malu | December 25, 2009 | Reply

Hi Esther

I went to FMC too and my results came back at 1 in 700 as well. I was quite optimistic, but the doctor who saw me sort of insinuated I should have an amnio.
At the Royal Free Hospital, where I was having my baby, they completed discouraged it, although my nuchal translucency there came back as 1 in 300 (not counting blood tests nor nose bone).
It is very hard to make a choice when the public system is trying to save money and the private system is trying to make money.
I had to recur to a friend of my family in Brazil, who happens to be one of the best obstetricians in the country. She helped me to make the decision of going for the amnio, which was done at the Royal Free.
The procedure and results were fine, but I was very unhappy and worried about miscarriage until 2 weeks after, especially after I felt the baby moving.
Fortunately, all went well and my boy is now almost 2 years old.
Next time, though, I think I’ll go for a CVS, which is done before 14 weeks.

22. Viva | May 23, 2010 | Reply

They found a soft marker for Down’s Syndrome at our 20wk scan – a mildly dilated kidney. We were offered the amnio and decided not to have it due to the a) the risks involved, b) the lack of other markers, and c) because we were pretty sure we wouldn’t have aborted… I’m 35, it was my first pregnancy, and it’s the kind of thing that only happens to other people, right? I had a very easy pregnancy, all other tests came back ‘normal’ and we didn’t think about it again until our little boy was born with an almost-ok kidney… and Down Syndrome.

I hope not to cause undue worry for any of you lovely-sounding people, but I’ve realised now that although things don’t always turn out the way we plan or hope, we somehow learn to make it ok… and then more than just ok. Our little one is only 3 months old so I haven’t totally come to terms with things yet (tho’ I am beyond the blackest depths), but it’s starting to look different from here.

He is a perfectly beautiful baby, with a rock-a-billy quiff and the prettiest blue eyes. He’s a happy little boy who doesn’t cry much, smiles and coos just like his friends and is sleeping through the night already (which causes no end of jealousy!). We have our own challenges yes, and our chap may not be the image of ‘perfect’ that the baby industry portrays, but there are magical moments for us too & we know there’ll be plenty more as he grows up.

Thank you for listening to my story. It’s the first time I’ve written it down and I’m glad to be sounding so positive – it’s taken me a while to get here. Medicine isn’t an exact science and life is unpredictable, though happy-ever-afters come in many shapes. Maybe normal is overrated! At the very least I’m glad I never had to make a difficult decision.

Congratulations to you all, and plenty of luck as new Mummies X

23. pd0c | October 5, 2010 | Reply

Viva I’m so happy to hear that your in a good place now. Your boy sounds lovely!!!! I just wanted to repsond to you by saying that based on bloods alone I was given a 1/222 chance of having a baby with DS. I refused the amnio as I was told that 1’d have a 1/100 chacce of miscarriage and I reasoned that there is no way I wouls be able to go through with this effectively I would have double the chance of miscarriage campared to DS risk. I’m currently 22 weeks pregnant and have been through a pretty tough time. What I have realised is that I want my baby (girl) so badly that Its made me realise that to terminate based on imperfection is too high a price to pay for a perfect world. That wee girl is me and my partner rolled into one and we’ll accept and love her more than anything person we’ve ever loved . I know it’ll be hard having a DS baby but the rewards outweigh the negative factors!!!

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