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Old Aug 29th, 2013, 13:03 PM   1
Arya80
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NT Scan results: high risk. Sooo scared and confused :(


I've received a phone call from a midwife today. She confirmed I was in a high risk group for Down's syndrome. Baby's neck measurement at 12+2 was absolutely perfect (around 1.2mm) but the blood results have put me at a risk of 1:150 (high risk is defined as 1:150 or less)... I did not expect this phone call at all and feel utterly shocked, scared and confused as to what I should do.. I know the factors that increased my chances are the fact that I'm 33yrs old and this is an IVF pregnancy but apart from that I am perfectly healthy, have no underlying conditions, am slim and fit, non smoker and non drinker. I need to decide in a day or two whether to have a CVS or amnio or nothing... I don't want to risk my baby's life (risk of miscarriage is about 1%) but then I do want my baby to have a quality life, too. Could drugs like: progesterone, oestrogen, steroids, anticoagulation injections have affected the blood results to artificially put me at more risk that I actually am?? I'm soo sad today. Only last week I was over the moon with 12 week scan and baby's neck measurement. What should I do???



 
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Old Aug 29th, 2013, 13:09 PM   2
Louise88
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Aww Hun I'm sorry you received high risk news, 1:150 chance is still a good chance baby won't be born with Down's syndrome, and even so there's a few downs people in my town with jobs and living a normal life there are a few members on here who got higher risk results and everything's turned out fine I hope someone comes on to give you there success stories. What a worrying time for you

This is why I declined all the tests I don't think I could cope with all the worry I just feel what will be will be and I will love my baby regardless



 
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Old Aug 29th, 2013, 13:19 PM   3
Arya80
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Quote:
Originally Posted by Louise88 View Post
Aww Hun I'm sorry you received high risk news, 1:150 chance is still a good chance baby won't be born with Down's syndrome, and even so there's a few downs people in my town with jobs and living a normal life there are a few members on here who got higher risk results and everything's turned out fine I hope someone comes on to give you there success stories. What a worrying time for you

This is why I declined all the tests I don't think I could cope with all the worry I just feel what will be will be and I will love my baby regardless
Thank you Louise. I wish I never took this test. I wasn't sure about taking it at all but stupidly thought the results will come back as low risk and it would be one thing less to worry about. The hard part is that my results are borderline (story of my life, nothing is ever straight forward). Had they been 1:151 instead of 1:150 I would have been classed as low risk and not offered CVS and amnio. The hubby is more positive than I am and says we shouldn't do any tests and that the baby is fine. I know that many people with Down's syndrome manage on their own OK and can lead a happy life. On the other hand I know someone who has a brother (now over 40yrs old) with a Down's syndrome, insulin dependent diabetic on a wheelchair, with other underlying conditions, requiring care 24/7 by his elderly mum who is now really struggling, Dad died early - struggling to cope with all the stress etc. There are so many different scenarios and this is what scares me



 
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Old Aug 29th, 2013, 13:30 PM   4
liz1985
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Im sorry your going through so much stress. I had a friend concieve through ivf a few years ago, and they tokd her she couldn't take the test as the treatment would make the results invalid, so I think its definately possible all the drugs etc have affected your results. Also im not great at maths but I know 1:150 sounds high but it only works out at about 0.05% ( sorry not exact) which is actually really low.

My mums results with my brother came back high due to age, 1:70 and they offered her a more detailed scan only checking for signs of downs before she had to decide on further action. Is this something you could ask about?

I know you cant help but worry, hopfully one way or another youll be able to put your mind at ease.



 
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Old Aug 29th, 2013, 13:50 PM   5
Left wonderin
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Arya firstly a really big hug for you , that news must have been a shock and scary !! It's very very likley that everything will be just fine with your baby . Unfortunately there are no certainties for anyone with any of the children we make , this includes after we give birth . Life throws up so many challenges ans curve balls . If you thought of each and every possibility I think you would go mad , the only certainty is that life will be tough sometimes and then we just have to deal.
Today you have a wonderful miricle growing inside you , getting stronger and bigger every day , for me all I an do is take each day as it comes during the growing of this human and after it arrives on earth . To do anything else I wouldn't cope with the worry of it all !!!!!



 
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Old Aug 29th, 2013, 13:57 PM   6
Heramys
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I'm so sorry
I too got pregnant through ivf so I researched the test thoroughly and it's actually not used in many countries when you've gone through ivf. Reason is they haven't really figured out a good and accurate algorithm yet. Some claim they have (Britain is one country) and some don't.
And as we're having twins, we decided not to go ahead with it as we were not prepared to terminate one of them and risk the other one. A bit different to your situation but still.
Also 1:150 means if 1 risk out of 150 also means 149 out of 150 is healthy.
An amnio has 1:100 risk of miscarriage. Just so you see the proportions.

I'd ask for more information if I were you. But if an amnio is going to put your mind at ease then it could be worth it. However I think you need to decide before what you would do if the results come back with anomalies. There's no point risking anything if the results don't matter.

Hugs again and think that the odds still on your side.



 
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Old Aug 29th, 2013, 14:07 PM   7
happigail
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Maybe read some blogs of parents of downs children. The quality of life can be better than for us. I understand why you feel worried, but you have an extremely good chance of not having a Downs child. But I still maintain they are a beautiful gift for the soul.



 
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Old Aug 29th, 2013, 14:14 PM   8
Sherley
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Oh, you poor thing, how worrying for you. The tests are pretty inaccurate at the best of times. Any of us, high or low risk, could have a baby with Down's syndrome. The tests just look at probAbilities. Good luck in whatever you decide to do x



 
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Old Aug 29th, 2013, 15:31 PM   9
Lillypots
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im so sorry to hear that i know exactly what your going through. i was high risk 1 in 95 chance due to bloods, nt was perfect so same situation as you. i had the harmony blood test/maternit21 depending on where you live. 99.9% accurate with no risk of miscarriage. my results came back fine. like others have said it all depends on what you would do if you found out baby did have a problem, if it wouldnt change anything, then theres no point risking the amnio/cvs because it wouldnt matter either way. i wasnt sure what i would have done however i couldnt have spent the next 6 month not knowing which is why i had the harmony blood test. i think you will be fine 1/150 isnt too bad a number, however only you and your partner will know what to do, good luck :-)



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Old Aug 29th, 2013, 15:36 PM   10
WantsALittle1
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Hi sweets, I was given a risk factor of 1/210 with this pregnancy and it had me scared to death because that is 5 times higher than the risk factor for my age group. My result was high due to larger than average nuchal fold (2.3mm), high hCG and low PAPP-a. If you can, find out what your numbers were for these blood factors. A 1.2mm nuchal fold measurement is GREAT. I personally would weight that very highly, and I personally have not read any stories or heard about a DS baby having a fold that small.

With DD (1/2500 risk factor), my hCG was 2.5 MoM (multiples of median)--2.5 times higher than the median hCG for her gestational age! The genetic counselor was blown away by that hCG, but DD does not have DS. Why her hCG was so high, we'll never know, so the blood hormone levels can be wacky for totally random reasons!

I can tell you the thought process that my husband and I went through during this period. Hopefully it helps.

First of all, we decided against CVS and amnio no matter what. Even though the technology has come a long way, even if our child had DS we would not sacrifice his life (1/100 - 1/200 risk of fatality for the fetus). We decided that we'd rather be surprised at birth by a child with DS than lose a child to amnio/CVS. Luckily, there is a blood test (MaterniT21) that gives reliable results in 7-10 business days and poses no threat to the baby--I would highly recommend you talk to your doctor about it.

Secondly, I tried my hardest to find a nasal bone on the nuchal scan pics and even though the pics were not zoomed in, and not taken at the right angle, we are pretty sure we saw the nasal bone and that put our mind at ease while we awaited the test results.

Third, we realized that a person is a person, and that even if our child were born with normal chromosomes that's no guarantee that he/she would not be special needs, would not be different, and would not need special care. My daughter suffered severe cord entanglement at 31 weeks and we nearly lost her. It was a waiting game in the NICU and after her birth to see if she had suffered any brain damage during the entanglement (she had decels and stopped moving altogether so they got her out via EMCS). She had normal chromosomes, yet there was a real chance that she was going to have brain damage or physical disabilities, and that was okay. From the moment we saw her, we knew she was ours and NOTHING else mattered. She could have had an arm growing out of her forehead, ya know!?

I guess I'm saying this because there are no guarantees in life, and even if a baby was born with DS, that baby is still half mommy and half daddy, and will still resemble them somewhat, will take on their mannerisms, and can lead a happy, rewarding life. There are very real challenges in raising a DS child, but there are challenges in raising children period! It is a waiting game, but just realize that your baby is YOUR baby, and he/she is perfect however she is, and whatever may befall him/her in life!

I really hope this helps. It SUCKS to have to wait, but all you can do is get the tests done, take some deep breaths, talk it out, and live life to its fullest. These hiccups force us to face our fears and overcome them. I was scared to death until we made peace with all the possible outcomes, and once I did I felt silly for ever worrying!

xoxo, please PM if you need to talk. I'm here!



 
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