Possibility of down Syndrome

Updated on September 02, 2006
J.O. asks from Louisville, KY
15 answers

My sister in law just had a ultra sound done and they think the baby might have Down Syndrome. They did a neck measurement and apparently the neck is not the right size. I have heard of other women hearing the same thing and their babies are born perfectly healthy. Does anyone hear have the same experience? Also, if you have had a baby with Down Syndrome do you have any advice for her. I would like to help her out and information is key.

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So What Happened?

Thank you for all the response! I passed the information along to her.She had another test done and was told the baby has a 90% chance of being perfectly fine. So now she just has to wait it out. Thanks again!

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S.

answers from Spartanburg on

First of all Down Syndrome is nothing to fear. It is a handicap, but most children born with it can still function normally with a little help and extra care, and they are terribly sweet children. Doctors always give worst case scenrios, and end up worrying people unnecessary. Below I have attached a website that can give her some information on tests that can be done in the womb that are relatively safe to determine if her baby has down syndrome. I hope this helps.
http://www.yale.edu/opa/v29.n32/story10.html

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T.C.

answers from Spartanburg on

Hi J.!! Hope Kindergarten is going well for your daughter.My son just started this year as well.
As far as your sister-in-law's situation-I recently gave birth to a third child-a beautiful baby boy. During our pregnancy with him, we were sent to have a level 2 ultrasound due to the appearence of an echogenic foci on his left ventricle. We were told that this could be Down's. we were scheduled 3 1/2 weeks away for a level 2. We were scared and nervous the entire time and when we finally had the US,the ultrasonographer had to remeasure his neck and nasal areas three times. She told me to go and sit for the Dr to come and talk to me. Then she came back and took me back to measure it again. Needless to say I was terrified. His measurements were barely under in the "normal" range and we were told that he appeared healthly but they couldn't be sure. We would have to wait and see. Well, I researched everything I could and found several sites full of information-none that eased my fears though. There are several support groups that have discussion boards and information for expectant parents. My son was born via emergency c-section due to my health. I was tested for a neurological disfuction which now we believe that it was severe preecclampsia that disguised itself. We think that what apeared on his US as an echogenic foci was nothing more than a higher density mark that showed up brightly, and his neck measurements are now considered normal-he just had a chubby neck with three chins!!! I sincerely hope that all goes well for your sister-in-law and her family. My thoughts are with you and her. Take care and I hope that what I have typed will help in some way.

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A.B.

answers from Indianapolis on

Please let your sister-in-law know that first of all, what they found doesn't necessarily mean that her child will have Down's Syndrome. But...if he/she does...its not the end of the world I promise you that.

My 9 yr old daughter is special needs. She was diagnosed at 2 1/2. When people found out that she has a diagnosis, their first response was "I'm so sorry." But I quickly explained to them that there is no reason to be sorry. I have a beautiful, intelligent, active lil girl! She is the light of my life! She has no idea that (according to society) there is something 'wrong' with her. We've told her since she was old enough to understand that she is 'special'...that we are all different...that she can do things that others can't and that there are things that others can do that she can't. Children with 'special needs' need to be taught things differently than 'normal' kids...but they can and do grow up to be healthy, productive, intelligent teens...young adults and adults. They want all of the same things that we want....to be loved and accepted for who they are...it's that simple. We are bringing our special lil angel up pretty much the same as our other children. From my experience (both professional and personal), the kids with 'special needs' who are 'babied' or have everything done for them have a much more difficult time as they get older. Now, my lil one is also the baby of the family...so...she is a bit spoiled...lol. But, as far as she is concerned, she is just like the other kids.

My 'special needs' daughter is 9 yrs old. I have a nephew who is just 3 months younger than she is (he is also 9) who is also 'special needs' , who has been brought up very different than my daughter.

We have been hands on with our daughter. We've searched and researched for the best possible care and ways to 'handle' and 'take care of' our daughter. We play with her and read to her. Like any 'normal' 9 yr old girl, she has a bedroom full of toys, games and books. She is in mainstream 4th grade this yr. She plays T-ball, is on a bowling league, is a cheerleader, love Nascar and football and loves to shop...lol.

My nephew on the other hand, altho their diagnosis are pretty close...still is difficult to understand. He spends most of his time watching TV and playing video games for hours on end. His behavior is out of control. His parents didn't/don't take time with him. They don't play WITH him or read to him. They find things to occupy his time so they can continue with their busy lives. And they are wondering why my daughter is doing so much more than their son.

My thought from day 1 was...if we as her parents/siblings don't do all that we can to help her to be her best possible...who will? Yes, it takes time from other things that we may want to do. But, you know what? Those things will still be there after she goes to bed and/or is no longer needing/wanting our undivided attention. We all want the best for our children. We are their guiding lights and they are our shining stars!

There are A LOT of services and specialists in the Indy area who can help with Down's Syndrome kids. IF your sister-in-law is blessed with a 'special' lil one...remind her to thank God for him/her and do all that she can to help her child to be his/her best possible. And feel free to either IM or e-mail me if you want info.

A.

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A.S.

answers from Indianapolis on

When I had my last ultrasound, they looked at a few different things that might possibly indicate Down's. One was the ridge of the nose, most babies with no ridge on their nose have Down's. Also they looked at the pinky (I think it was the pinky)to make sure all of the bones where there and they also looked at the spacing of the eyes. There was never any mention of the neck. Having ultrasounds are wonderful, but they also make us crazy.

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L.

answers from Indianapolis on

Dear J.

Please remind your sister in-law that ultrasounds are NOT conclusive and definite. She needs to contact her OB and explore options that she may be able to take to ascertain if Down's Syndrome is truly and issue of concern. (ie Amniocentesis and etc). Also, I have a child with autism (high functioning) and can attest that special needs children are just as lovely and amazing! I would not trade my little boy for anything! I also have two other children who are completely and totally "typical".

No matter what the results are ... Down's syndrome, not Down's Syndrome, the Lord will give her all she needs to parent this little one. It's all about learning to dream new dreams IF it is a special needs child... but you're still a mommy.

I wish you all the best,
L.

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A.G.

answers from Spartanburg on

The same thing happened to one of my friends who was pregnant with twins. The ultrasound showed a "Down's Marker", and her baby is absolutely fine now!

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S.S.

answers from Spartanburg on

J.,

I do not have a Down Syndrome child, however even if the child does turn out to have Down Syndrome, just let me say that those children are some of the most loving children. And she will love her child either way. If this is true, I am sure it will be tuff but it will all be worth it. Good luck you everything.

Jenny

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M.M.

answers from Jacksonville on

When I was pregnant with my second, my AFP tests came back saying that my son may have Downs Syndrome. The only way to know for sure is to have an Amnio. Then you have to decide if the small chance of miscarriage is worth having it done. It's a really difficult situation and I am very sorry for her. If she really wants to know she should do the amnio. My son was perfectly healthy, and we did not do the amnio. So we did not know for sure until he was born. Usually your doctors office can give you names of support groups etc. for families with Downs babies. Please tell her Good Luck.

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D.P.

answers from Indianapolis on

Has she had the three marker test? There is a new one that only involves a finger prick and is more accurate than the blood draw. Babies grow at different rates and the baby just could have been holding his/her shoulders up. There are endless possibilites. I know someone who was told her child might have it and he was born fine. Good luck!

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J.

answers from Indianapolis on

I had a friend who had the measurement thing done and had a healthy baby as well. I believe measurements are what they call "soft signs" menaing they're not the strongest evidence, but can point in that direction. I would recommend checking Web MD and seeing what it says.
J.

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K.

answers from Indianapolis on

I don't really know much about the test itself but I just had a baby three weeks ago and when I was pregnant they asked me if I wanted the test. My doctor warned me though that a lot of the time it is wrong and people are told their baby had down syndrome and it stressed them out the whole pregnancy and then they have healthy babies. So my doctor actually says the test is not even worth it because it is not at all accurate.

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V.R.

answers from Indianapolis on

She needs to have the amnioscentesis done to put her mind at ease, or to prepare herself for the birth and care. I had one after the screening came back high and I can tell you, regardless of the outcome, it was much better to have the knowledge than stress and worry and possibly make a healthy baby sick because of that. I did not think the amnio was a big deal at all....actually not painful at all.

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S.K.

answers from Louisville on

This is my opinion, and that is all. I'm diabetic and thought that I may never be able to have children. I had my daughter 7 years ago and was blessed with a beautiful completely healthy child but if she had been a Down's baby, Cerebral Palsy or had any other ailment or disease I would have looked in her little face and thanked God that I was blessed with motherhood. There are so many women out here that struggle with IVF and other issues, some that no matter what they do they will not have a biological child of their own and can't afford adoption...so she needs to prepare for the situation and I won't say the 'prepare for the worst' because I do not consider a Down's baby the worst scenario. I grew up with an aunt who has Cerebral Palsy, she can't walk, never has but she is the light in my family's circle. She brought more joy to all of us then you could ever imagine. You make the best of what you are given and find the blessing in it by reminding her that the baby no matter what is still part of her and will be the child that she always wanted she will just have a child longer because they grow differently physically and mentally. If the baby is Down's then she should find a support group to help her with issues. Years ago they wanted to put these children in 'facilities' to 'better' care for them but they really only contributed to their early demise and held them back emotionally, physically and mentally! That child will be the light in her life whether it is Down's or 100% healthy!! Remind her that you all will love the baby no matter what the outcome, you want regret it!!! My thoughts and prayers will be with you!! :)

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B.M.

answers from Spartanburg on

I had several ultra sounds done with my second child (due to my age and diabetes) and I was told that there was a high chance that he would be born with Downs. No test was going to change my decision on whether to have this child or not! They suggest an amnio (which I did not do until my 8th month of pregnancy because of the risk to the baby-figured by this point it would just induce labor a few weeks early... but also give me a week or 2 to "prepare myself", should it be downs). He was born perfectly healthy. I think they put many expecting mothers through undo stress with their "guessing" from the test results.

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S.M.

answers from Indianapolis on

I am surprised they have not requested a high resolution 4D scan. My OB found a "marker" of Downs --a calcification in the heart-- and we had the 4D scan to check all other markers. They did many measurements of leg bones, feet, neck, etc. and found no other markers. She was born perfectly healthy... it sure helped ease our minds. So, if she has the ability to do the high resolution scan and get the "markers" checked, she may have a better opinion as to what is really going on. Good luck.

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