1 In 11 Odds of Having a Child with down Syndrome and Scared

Updated on July 25, 2012
M.J. asks from Thousand Oaks, CA
21 answers

I just got my 1st trimester screening results back and I have a 1 in 11 chance of having a child with Down Syndrome (DS). I will be 40 when I have the baby, so I'm sure that didn't help my odds. My perinatalogist had me take the new MaterniT21 screening test, but I won't get the results for about 2 weeks, so in the meantime I am left to worry. Has anyone gone through this and either ended up with a child with DS or one who didn't have it? I have two older children (ages 4 and almost 2), so having a child with special needs might be a difficult addition (although they are both pretty high maintenance, and they don't have "special needs"), but I would NOT abort the baby. Please let me know if you have any words or advice or could please just say a prayer for us!

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answers from Chicago on

I am so happy to hear that you wouldn't abort your baby in either case. That is so rare, and I know so many families with children with Down's. One was born to a 20 year old mother, another to a 27 year old mother. No "risk factors," but it happened. Very few people (outside of their own family and close-knit circle of friends) were supportive or encouraging to them. They have such wonderful lives.

Whatever the results, your child is in good hands. If you need some encouragement during the next 2 weeks while you await the results, this page might be inspiring to you: http://www.idscforlife.org/ The International Down Syndrome Coalition

Prayers for your family!

ETA: Wow, Dana K, really? A woman tells us all up front that she would "NOT abort the baby," and you imply that she wouldn't be making a good decision? Unreal. The fact that such a high percentage of babies with Downs are aborted is TRAGIC, not something to be celebrated.

ETA2: Yes, I know 2 adults with Downs who live independently. One works at the child care center that my old gym operates. Another is someone I used to work with in the kitchen of a nursing home. This article might be inspirational to you: about a 26 yr old man with Downs who runs a restaurant - http://www.huffingtonpost.com/2012/06/22/tim-harris_n_###...

8 moms found this helpful


answers from Los Angeles on

Nobody wants to face the unknown. But if your baby is Downs I just want to share that an acquaintance of mine with a downs baby wants to adopt more Downs babies. She said that much to their surprise he has been an incredible blessing.

7 moms found this helpful


answers from El Paso on

1 out of 11 translates to approximately a 9.1% chance that your child WILL have DS. Which also means that there is a 90.9% chance that your child WON'T.

That said, you will love that child no matter what it's situation may be. Could it be a struggle? Absolutely, but that doesn't mean you'll love him/her any less because of it. Be strong, and best wishes!

7 moms found this helpful


answers from Washington DC on

It is so easy for others to say "relax" but I can understand your concerns. Your child might not have DS but if it did and I was in your shoes I would maybe think that there are a lot worse things that a child could have. My reason is my brother has DS. He is the sweetest, kindest, happiest person I know. Everyone loves him as soon as they meet him. He has so many friends and a busy social life. He has won so many medals for swimming and trophies for bowling. I have taken him on vacation a few times and let me tell you it was easier than taking care of a kid or elderly person. He is so gentle and adores all his nieces and nephews who are also very protective of him. I have only ever seen him sad twice in his life and that was when he broke his arm and when he had to change schools. Just this year we celebrated his 40th Bday and it was amazing, the people who came and the wonderful things they said about him was very emotional.
So I hope everything goes well for you and whatever happens it will be a blessing. Oh and my mum had 4 of us my brother with DS being 2nd born and then she had my sister and I (twins) so it was 3 kids under 4 yrs old. Hard work sometimes but she wouldn't have changed a thing. :-)

6 moms found this helpful


answers from Pittsburgh on

Well...I delivered my son at 39. After reading the screening "fine print" where they say a positive is not a guaranteed positive and a negative is not a guarantee negative, I chucked the paperwork and figured "Why bother" when it wouldn't give me an accurate result either way.
I also declined amnio, because for me, like you, abortion wasn't an option.
Relax. Breathe. Enjoy your pregnancy!

5 moms found this helpful


answers from Pittsburgh on

I would have the amnio - no question. Actually I skipped the screening tests and had an amnio - I was 40 when DS was born. Screening tests tell you your risk is higher than average - but are only screening tests - not definitive diagnostics. The odds are still in your favor but 1 in 11 is a high risk in my mind. You would never get on a plane that had a 1 in 11 chance of crashing.

Since you have two children whose lives would be markedly affected if you have a trisomy baby - I would do a lot of additional research if your amnio shows trisomy. Down syndrome children can survive into their 40s nowadays (and despite having sunny dispositions they can have difficult and painful intestinal and heart complications). This child may well outlive you and leave your two and four year olds responsible for their sibling for life. This is certainly your choice - but not a decision I would impose on my child.

If your amniocentesis is positive for Down syndrome - what you do is your choice. But you should NOT feel pressured by opinions on this site. Between 87 and 98% of trisomy 21 pregnancies in this country are aborted. In Europe, the rate is at least 91%. Please do not let opinions here make you think that this choice would be unacceptable.

5 moms found this helpful


answers from Hartford on

Your child has a 91% chance based on this first initial screening that she WILL NOT have DS. These screenings are notoriously inaccurate and more frequently than not give false positives. The odds are highly in your favor of having a baby without DS.

5 moms found this helpful


answers from Jacksonville on

I wish I could send you the picture I got from my niece today. She was posting pics of her little brother (he's 4) at the beach. He has DS. The youngest of 4 siblings (the older 3 are all girls: 1 going into 3rd yr of college, 1 starting college, and one 9th grader). My brother and my SIL have had some rough times, but not because of their little boy. Yes, there are often many and various challenges that can come along with having DS, but in many ways, they are just the same as any other little baby. Their son seemed to be a little more predisposed to catching colds, and he had reflux (lots of babies do). Other than that, just a little delayed developmentally with speech/communication. Physically, he is quite healthy. He goes to school now, too (specialized class).

His sisters all ADORE him. As do their friends. And he is absolutely the sweetest child. They absolutely consider him a HUGE blessing to their family.

The screening can give you pause and stress you out. But as someone pointed out, that means you have a 10 in 11 chance that your baby does not have DS. Even if your child does have DS, it won't be the end of the world. It might even open you up to a whole new world you wouldn't otherwise experience. Full of wonder and grace and blessing on a totally different level. Like visiting Holland instead of Italy.


4 moms found this helpful


answers from Honolulu on

The only thing that is highly conclusive, is an Amniocentesis.

Those tests you had, are not accurate.

Per your age, you can have an Amniocentesis.
I had that, with both my pregnancies.

I would not assume anything, unless you have an Amniocentesis.

I am surprised, your Doctor did not suggest the Amniocentesis.

My OB/GYN, does not believe in those 1st trimester "screenings." They are not accurate.

4 moms found this helpful


answers from Philadelphia on

My pernatoligist told me my 3rd child had DS based on ultrasound results. She had only seen one other child with my daughters marker and they were a severely effected DS child. Long story short...my daughter does not have DS. The doctor apologized but it scared me terribly. I am sending prayers to you and your baby.

4 moms found this helpful


answers from Boca Raton on

I've never been through this so no good words of wisdom . . . I *will* pray for you.

My cousin and his wife had a downs baby when they were 21, so it's not always age. She is a sweetheart, and they had 3 more after her.

Good luck and God bless.

4 moms found this helpful


answers from Denver on

I had surprise son 3 at age 45.

As my doc suggested, I skipped all screening tests and did amnio. He said that if I was going to do amnio, screening was a waste of my time and money. My son does not have Downs...

..so, not a direct answer to your question (sorry), but maybe some encouragment...

I had son 1 at age 39 and had all of the screening done - no one would tell me the result of my screening test for Downs - but it turned out they FORGOT to do it - and had me all worried because no one wanted to admit to that. I had a different doctor by son 3 (son 2 was adopted).

3 moms found this helpful


answers from San Francisco on


I am so sorry you are struggling with this. I know it is hard waiting for test results! I don't know if you are a believer or not, but I really believe that kids with different needs are born to the best parents for them. God specifically gives parents the kids that they can handle. I have several friends who have kids with down syndrome and those kids are the most happy, loving, complete rays of sunshine. Yes, they have challenges and things are hard sometimes but the spirits of kids with Down Syndrome are just so fantastic. If you do end up being blessed with a baby with DS, you will be exactly what that child needs. I will be praying for your family and for this child no matter if they have DS or not to be healthy, happy and the best new addition. Take good care----M

3 moms found this helpful


answers from Kansas City on

I think you should think about how every child is different. Some differences are noticeable at birth and some are not. Dedicate yourself to being the best parent you can be to all your children no matter what. Families have to adjust to a new baby with or without disabilities. Two weeks is a long time to stress about something you cannot or will not change. Make peace with the fact that you will love this child no matter what and await his or her birth with joy.

I wish you the best.


3 moms found this helpful


answers from New York on

I was 38 and had a false postive screening test. It is so common, ot makes me wonder wh they offer it. My daughter is now a healty 4 year old.

I am currently pregnanat with #2 at age 43, and I did not screening tests, went straight to amnio and have another healthy baby.

Screening tests are often wrong.

I will say a prayer for you, your baby on the way and the rest of your family.

God Bless!

3 moms found this helpful


answers from Los Angeles on

I know a couple of friends whose original screening said they were a higher risk for DS. They both got amnios and neither baby actually had it.

Since you plan to keep the baby regardless of the outcome, just try to relax. I KNOW how hard that is, but stress isn't good for the baby and there's nothing you can do about it. Just tell yourself there isn't anything you can do about it now and, when you get the results in a couple of weeks, you can figure things out then.

sending good thoughts for a healthy baby.

3 moms found this helpful


answers from Chicago on

I just wanted to give you a cyber hug. I am a few weeks away from taking the 1st trimester screen. I'm 40, with a 4 and 2.5 year old. I'm petrified, so I can only imagine how you are feeling.

I did tell myself before getting pregnant that going to Detroit (DS) rather than Chicago(normal) wouldn't be all that bad. All kids are blessings, and we are never given a hand we can't play well, if we try.

Keep us posted. I hope everything turns out alright.

2 moms found this helpful


answers from Los Angeles on

My advice is: only deal with the information that you have NOW vs. speculating on what MIGHT BE. It is exhausting and will not change the outcome either way.
Get an amnio & find out for sure. Screening tests will simply continue to give you ODDs, but not a diagnosis. At this point, there isn't anything you can do to change the outcome either way, but knowing for sure will give you time to prepare and plan, either way. At that point, you can really start diving into what additional resources you may need, what specific medical and developmental issues your child may have, and start tapping into support groups to help you prepare.
I will say, there is a whole spectrum of Down Syndrom abilities and what one family experiences may or may not indicate what could be in your future. My good friend who has a daughter with DS found out at her birth, and were caught unprepared for even the possibility. However, they figured it out quickly - she is very functional, goes to school, but does have her own schedule to meet milestones, etc. On the other hand, our baby was diagnosed in utero at 12 weeks, and had other fetal developmental issues, and we miscarried. It was very very sad, as that child would have been loved and welcomed in our lives, but our experience taught us a lot about being compassionate toward people of all different abilities, and it taught us to view things differently that are outside of our control.

2 moms found this helpful


answers from Seattle on

We had a small scare about possible DS - nothing compared to what you are going to and I was terrified. My baby did not turn out to have DS and I am thankful, but I would have loved him the same either way - it just works that way with your children :).

The good news is that those 1st trimester tests have lots of false positives, so it could be nothing :).

Either way I am sure you will fall in love with this baby :).

I will be thinking about you!


2 moms found this helpful


answers from Los Angeles on

I didn't have any indications of problems with my pregnancies but just as a bit of reassurance I had my children at 39 & 42. They are both healthy and as happy as teenagers (16 & 13) can be. lol

My friend's sister was told during her pregnancy that her 3rd child would be born with downs. She's a junior in HS and is perfectly normal. Put your mind at ease.

2 moms found this helpful


answers from Los Angeles on

After reading your helpful responses, someone brought up a point I had not thought of before. I knew raising a child with DS would be different, but I would love the child very much and s/he would be a blessing. The part I didn't think about was if/when my husband and I pass away and the child is still living (since we are already older parents), the responsibility would go to my girls. I'm not sure this is fair to them. Does anyone know any older people with DS and can they live on their own as adults or does someone have to care for them? I'm sure it depends on the individual, but in general, can people with DS live on their own?

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