Down syndrome is a genetic condition caused by extra genes from the 21st chromosome that result in certain characteristics including some degree of cognitive disability, and other developmental delays. The incidence of Down syndrome in the United States is about 1 in 1,000 births. There is no association between Down syndrome and culture, ethnic group, socioeconomic status or geographic region.
Age Related Risks
Generally, the chance of having a Down syndrome birth is related to the mother’s age. The odds of having a child with Down syndrome at age 35 are about 1 in 350. Under age 25, the odds are about 1 in 1,400. At age 40, the odds are about 1 in 100.
Types of Down Syndrome
There are three types of Down syndrome:
- Trisomy 21 — An estimated 95 percent of people with Down syndrome have Trisomy 21, meaning an individual has three instead of two number 21 chromosomes. We normally have 23 pairs of chromosomes, each made up of genes. During the formation of the egg or the sperm a woman’s or a man’s pair of chromosomes normally split so that only one chromosome is in each egg or sperm. In Trisomy 21, the 21st chromosome pair does not split and a double-dose goes to the egg or sperm. An estimated 95 percent to 97 percent of the extra chromosome is of maternal origin.
- Translocation — This occurs in about 3 percent to 4 percent of people with Down syndrome. In this type, an extra part of the 21st chromosome gets stuck onto another chromosome. In about half of these situations, one parent carries the extra 21st chromosome material in a “balanced†or hidden form.
- Mosaicism — In mosaicism, the person with Down syndrome has an extra 21st chromosome in only some of the cells but not all of them. The other cells have the usual pair of 21st chromosomes. About 1 percent to 2 percent of people with Down syndrome have this type.
In addition to developmental delays, some common physical traits are an upward slant of the eyes; flattened bridge of the nose; single, deep crease on the palm of the hand; and decreased muscle tone. A child with Down syndrome, however, may not have all these symptoms.
Typically, parents of Down syndrome babies don’t have any symptoms themselves even though they may carry an abnormal gene.
Risk of Recurrence
After the birth of a child with Down syndrome, the risk of having a second child with Down syndrome depends on what caused the condition in the first child. A medical geneticist or genetic counselor should be consulted to get more precise information on the risks. The following are some general guidelines:
- Trisomy 21 — The risk of Down syndrome recurring is either 1 percent to 2 percent or the risk based on the mother’s age, whichever is higher.
- Translocation — The risk of Down syndrome recurring depends on if the translocation was inherited or not inherited. If not inherited, the risk is the same as the risk based on the mother’s age. If inherited, the risk depends on the type of translocation and the sex of the parent carrying the chromosome abnormality. For the more common “balanced†or hidden translocation, the risk ranges from about 3 percent when the father is the carrier to about 12 percent when the mother is the carrier. If a parent carries a rare “21;21″ translocation, the risk for Down syndrome is 100 percent.
- Mosaicism — The risk is about the same as risk based on the mother’s age.
Katie
i am about 3 months into my pregnancy, my boyfriend has a sister with down syndrome and i do not have any family health concerns. i just wanted to know whats the percentage of the baby having it and if i should be more concerned then ever? i am going to get the test done for it but i just feel really concerned at this point.
rebecca
hi i just found out through my blood test that i am of high risk to be having a baby with ds a friend mentioned typically you are larger in this pregnancy than others (which i am) did any of you find this to be true?
many thanks
rebecca
angela
No, I was smaller and lower down.
Jeanine
Here is a great site to learn about downs syndrome and other birth defects.
Good luck!
Justin
Thanks for sharing.
Justin
Do you have any others? Also, wondering if you might be interested in sharing resources with the community…Many ppl here are starving for information and I simply don’t have enough time…
Any thoughts?
Delighted
We gave birth to a child with down syndrome just 4 months ago. She was diagnosed at birth, and we were shocked. Despite this, I can assure anyone who is reading this that it will change your life in a positive way. Our daughter is beautiful. LIFE is beautiful. Do not despair. Fight for your sons and daughters. It is worth the journey. It is worth the struggle. There is hope and resources for you. When our daughter smiles…and your son or daugher WILL SMILE!….it will melt you and nothing else matters.
Justin
What a wonderful comment. Thanks so much!
Justin
le
I just gave birth to a DS baby boy on Sep. 25 and they did not tell me nothing at first but his temperature dropped and they had to take him to the NICU. On Sep. 29 they said they thought they needed to do a cromosome test on my baby. A week later the NICU doctor told me that the preliminary tests were negative but that they were still waiting on the other one. While waiting all my friends and family who had seen him they were telling me that the results were going to be negative because my baby’s features were not from a baby with DS. Yet, two weeks after, they gave me the news that my baby had DS. At first I cried because they said that he was not going to have a normal life (no wife, no education, no family, etc) that he was always going to depent on me. I am almost 40 yrs old. So, as a single mom with a 17 and a 10 yrs old children and with no other family here in the US, my concerns about what was going to happen to him if something goes wrong with me were humongous. I am still very scare about not been able to provide all the necesary things for him but I have been praying to God and I just wanted to thank you because of your words of wisdom and comfort. I needed them.
Tara
We were just told by u/s at 18 weeks one of our twins will have down syndrome. They offfered partial abortion to one twin! I am having these babies no matter who is in there. I am ready for whatever this spcial baby needs.
Justin Jilg
I can’t tell you how much I admire you.
–Justin
Kim lucky mother of Ian, 22 years old
I can tell you that you are so fortunate to be blessed with a child with down syndrome. They are the closest you are ever going to come to have an angel in your midst and that child will make you a better person. Be grateful and enjoy every moment. There are challenges, but worth every single backward step to help your child grow into a successful individual who will give back to everyone they meet and never ask for anything in return, except perhaps a hug and a clap for a job well done.
I am in the process of writing an ebook to help all those new parents and siblings on how to navigate the system and how to give your child the best opportunity for a very bright future. First words …. start reading books to your infant and get in touch with a government agency in your area that can help you get early intervention and support. You are truly blessed – don’t be frightened … be jubulent!!!
AUDREY ANDERSON
hi i have an eighteen old cousin who has really touched our hearts but i feel we have failed her by not giving her the best opportunities in life can you please assist me with the necessary information regarding DS organisation in our area or any skills development or workshop that you may know of i have no knowledge at all but i feel that is my responsibility to make a difference in her life how does she fit into our so called world without the necessary tools please guide me with this challenging journey AL
Deb Ehret
Tara,
I have twin grandchildren – boy/girl. The girl has down syndrome, boy does not. I can not tell you how much a blessing these babies have been to our family. They will be 4 in July and seems like yesterday our journey started. The boy loves his sister so much, and she can be a little mean to him and will hold her own, typical twins. You are lucky to have this opportunity.
Lori
I just wanted to say good for you Tara for not aborting one of your twins. I wanted to tell you that my friends sister was pregnant with triplets and was offered to selectively abort one of them because of a positive test for Downs. She said no and they were all born perfectly healthy and all 3 of them are A students in school. Good luck!
Eleutheria
It is wonderful to hear parents who have children with Down’s syndrome talk with so much love. I denied an amnio despite doctor’s suggestions because I had an ivf pregnancy and I could not afford to risk it. My risk during the first timester screening came at 1:162 and since then I have to admit that my life has changed. At moments I am feeling super strong saying to myself that I can do it, it will not affect my family, we can handle it because we have a lot of love to give and everything will be ok, at other moments i am feeling lost afraid about my baby’s future, about how society will treat my son, will it affect my elder daughter’s life,will it affect my relationship with my husband? I am due in January so I have another month and a half to torment my soul with all the what ifs. I used to think that i was a good person and now I question myself how good can I be if I am so afraid of having a child with Down’s, will I be a good mother to him?
Justin
Eleutheria,
Enjoy your pregnancy!!!! If you have a child with down syndrome, I promise you all will be ok. It is a time of adjustment but all of your fears will melt when you look into your child’s beautiful little eyes. 1:162 are very small odds so please don’t worry. You’ll cross that bridge if it gets there.
Just that you are thinking about being a good mother means that you will be! Again, enjoy your pregnancy. All is going to be great.
Justin
sam
we didnt know about our little girl,ebony,she is now 3.the doctor told me when she was born that my baby was a little bit down,i said did she need a pick-me-up?she knew then that i didn’t understand what she meant and told me,it would have been better if she let me see her first ,let me bond with her then tell me…all these thoughts were running in my head but i snapped out of it real quick she is my daughter that was it then i got to see her,she is beautiful…we are so lucky.in the hospital my mind was playing tricks ..i wanted to swap her with another baby,when this happened i hobbled down (i had c-section)down to the special care ward to see her(,every time i thought about it,i cried then i would go and see her )then i would be better.looking back now i think i was being stupid,maybe it was shock and the not knowing about her condition.when i speak with other mothers at disability programs and find out what they went through, and when they told me they knew when they carried them i have such high respects for them ,as i know that if i knew i wouldnt have had my beautiful daughter here now.
Patty
I turned 41 last month and found out I am pregnant a few days before my birthday. I have a sister who has DS, my mother gave birth to her when she was a few years older than I am now. I am concerned about the prospect of having a Down’s child even though I know how loving and sweet they are. I don’t know how to come to peace with the idea that it might happen.
Justin
Patty,
Don’t worry until there is something to worry about. Having a child with DS is a challenge but also a wonderful gift. If you should happen to be given the wonderful responsibility of being a parent of a child with Down Syndrome, you will love that baby and cherish the experience in a way that you can’t understand right now.
Have a wonderful pregnancy and please don’t worry … everything will be wonderful for you and your family.
Justin
Kim lucky mother of Ian, 22 years old
The universe has a way of giving only that which you can handle. Either way you and your child will be fine! Don’t worry!
Sue
Enjoy the journey of being pregnant!! There is no other journey like it. I became pregnant at 38 and was not large in size at all. I too denied and amnio as I did not want to risk the complications, and we decided to have the baby no matter what. God blesses people he knows can handle the joys and trials of having a child with Downs. Any negative thoughts you may have (and you’ll have more) are normal. No matter the parent, no matter the child, you will always wonder if you are doing a good enough job. We are all doing the best that we can with the resources we have….And use those resources available to you – that’s what they are there for.
That baby will bring you joys you didn’t know were possible. Enjoy the journey!
Becky W
This past month I have lost my baby at only 15 weeks of pregnancy. I did have an Amnio done, it was determined that I had a baby girl and that she indeed had downs. It was detected at 12 weeks of pregnancy that there was a high risk of DS, but the major concern was fluid around her heart. I was told that her heart defect was a result of the Downs. I am wanting to try again, for another child. My concern is that I will have to loose another baby … what are my chances of having another baby with DS or more importantly, my chances of loosing my baby?
Also, is there support groups and/or other sires that I can get this imformation from?
Sue
We have a daughter with Downs who just turned two. In late June 2009, we found out we were pregnant again, and very much looking forward to the journey – what ever the outcome. Well, it wasn’t meant to be, and in August I had a miscarriage. The lemonade out of the lemon, was that the child was chromosomally correct (no DS). While your odds of conceiving another child with DS are greater (especially if your age is a factor), there is still the hope that you will have a perfectly fine child as well. Again, enjoy the ride!
Cady
My little brother was born with down syndrome 4 and a half years ago. He is probably one of the most intelligent 4 year olds i have ever met. He is extremely smart an very talented ad loves to color. It is a challange when they are growing up, but they are so cute and loveable that it gets easier. So dont be scared, there really isnt anything to worry about.
monique richmond
hello im monique richmond im pregnant with my third child i was tested for down syndrome but they didnt yet do the fluid test the one they do from the tummy the doctor said that i may be ok the blood test tested 1 out of 650 for down syndrome so will i be ok no one in my family has it i have a 20 yr old son a 18 yr old daughter a 8 yr old daughter they all were healthy i am 40 yrs old i had my oldest at 20 my oldest daughter at the age 23 the youngest daughter at 33 i am now 40 i was a little worried but i am ok i believe in god i just needed some answers.god bless all the familys who are deali with down syndrome may god give them the blessing.please give me the answers .
Justin
Monique,
I hope things worked out for you.
Justin
Shawnda
I’m seventeen, and I am five months pregnant just about with a baby girl.We got a call three days ago from my OB, and he said the blood test came back positive for down syndrome. Whether my baby has down syndrome or not, i’ll love her with everything i have in me. I’m so scared, that I wont be able to give her what she needs. Any advice?
Justin
Hi Shawnda…My advice to everyone is always just to love your baby little girl with all your heart and the rest will work itself out and be wonderful in a way that you can’t understand right now…We have all had the exact same feelings as you and one thing that I’ve found to be universal among us is that we inevitably all feel that our lives change and our experiences become more meaningful and our perception of the World a little clearer.
Feel free to email me if you have any questions or just want to talk. We wish you the best with your baby girl. Life is so interesting .. sometimes we can’t explain why things happen but more often than not, they seem to happen to people that can handle them.
Take care,
Justin
Harvey
Hey Justin! I think this website is wonderful. You have done a great job. I did post on the expecting page but I wanted to do it here also. At 17 weeks my ob noticed that our daughter may have a heart defect, at that time the quad blood test they do did come back negative at 20 weeks we found out that yes in fact she does have a av canal heart defect, at 21 weeks we did the amino and at 22 weeks we did find out that all 4 groups of cells they tested did grow a 3rd 21st. I do have to say I was divested, I know you know all the emotions of what you go though. I blamed myself and wanted to know what I could have done to cause this, I had done everything 100% by the book. I learned there wasn’t anything I did to cause this, it is just something that happens. I was sitting in the doctors off crying and the genetic consular came in and handed my husband and I two books, on the cover of both of those books was the most beautiful babies with down syndrome. I remember crying and looking at my husband and saying they are beautiful. We are not at week 26!! We are taking everything one day at a time and learning as much as we can about down syndrome and av canal as we can before she gets here. We have also looked into places to have her heart surgery. do you have any suggestion of the best way to be prepared??
Justin
Thank you! My only suggestion to you is be prepared to have a wonderful little baby that will keep you awake…Get some sleep as often as you can
Your baby is going to be great! You are going to develop a bond with her that I can’t even explain right now. Something will change in you and your husband that will be magical. Just as any new parent, your view of the World will become clearer in a way that you can’t never understand right now.
It is impossible for me to relate what it will be like for you but I promise life will be better for you once your little baby comes. I tend to stay away from the various platitudes that are often used but the one that I always think is a truism is that you have been given an opportunity and a gift and once you have a chance to experience that gift, the pain will be a distant memory.
Please keep in touch. I look forward to getting to know you and your family more.
Sincerely,
Justin
Becca
My husband and I have 3 beautiful daughters! The youngest- 14months old, has DS. She is the sweetest baby! We found out at 5months pregnant that she had 2 holes in her heart and most likely had DS, we did the blood test and it was NEGATIVE, and I refused an amnio (fear of big needles). It was a very long and emotionally draining pregnancy. When she was born we knew right away that she was DS positive. At 4 months old baby girl had surgery to fix her heart- absolutely heart wrenching for me to see her going thru that. Today she is so beautiful, learning to crawl, rolls everywhere, has a few words, and loves to play with her sisters, but most of all her big sisters love their baby. To look at her most people don’t notice the Downs. To those of you who are just finding out, I say stick with it, because it gets easier.
Justin
I could not agree more..Thank you for helping and sharing!
Justin
Nikki
Hi,
I’m Nikki and I have a 6 month old son with ds. I have an older son who is 31/2 years old. I had testing done for both of my children to find out if they had ds. In the case of my second son the doctor didn’t bother to read the results and told me everything was fine. My son was born with ds and 2 holes in his heart which were closed at 3 months of age.
I find that I’m still having a really, really, hard time accepting his ds. I have tried many things to help: support groups, counseling, even antidepressants for a short time. I just feel like his special needs are going to be a life long burden. I don’t know how to feel better about this. His smile is sweet, like all babies, but it doesn’t make me see past the ds. Am I alone feeling this way?
Nikki
Justin
Hi Nikki,
i’m sorry you are having a difficult time…We never forget that our children have down syndrome either. It is hard on all of us. we all love our children but at the same time there are times when the unknown is debilitating and scary. I will say though that our children belong in this World and have a right to life just as much as any other person. Historically, different ethnicities, sexual orientations, and even sexes were considered to be lesser than other groups. The world became more enlightened and accommodating and I believe the same thing will be the case for our children. You have had a relationship with your child for almost 6 months and I’m sure you are entering a phase where the gap in other children’s abilities and your son is starting to widen. this can be difficult.
its good that you have been seeking help and engaging with others…finding the right support is very much the key to becoming more comfortable. my wife and I had to try a few times to engage with the right set of people to help us through things.
also realize, that things have progressed so significantly from the bad old days…early intervention, therapy, inclusion, etc have been proven to yield amazing results — many of our children will grow up and go to college, learn to drive, have a family, and live independently. the responsibility will be on you to help your child down this path but just as any typical child, you will shape your child’s future immensely if you put in the work. make sure you get support from the state…this is the time to get this going. My son started at around 6 months.
this is the time when we as parents need to take a deep breath and buck up and realize that we are the center of our child’s life and they depend on us for everything. you are not alone at all in this … please come back here and visit and talk anytime you need.
the only thing that matters is you and your family –everything else is just context.
Justin
Nikki
Thanks Justin,
I feel like I finally turned a corner. I am beginning to see my son as a person as opposed to a diagnosis. It was hard to do that initally with all the doctors appointments. However, now that he's becoming his own person with his own cute personality, it's a lot easier. I know I'll still have low times, but I think I was making things way too hard on myself by worrying to much about the future. The future will be whatever it is. It won't stop me from trying to do the best for my son to reach his potential. I just don't need to stress out as much as I did about it. Thanks again for your help.
Nikki
justinjilg
You epitomize everything that is good in our World. It is so easy to be selfish and negative. The fact that you have taken on this responsibility and march forward is the best / most important thing to do. Just love that kiddo and everything is going to be wonderful.
As I said before — this is between you and your baby. Nothing else really matters. I look forward to getting to know you and your family better.
Justin
niamh
HI Nikki. I have a 4 year old son with ds. It took me 3 years to get over the feeling of loss and deep, deep sadness. I had another child 15 months after Zach and I know that this helped but what really made a difference was getting therapy within a few months of having Zach. I underwent a type of therapy called choice therapy which helped me to deal directly and immediately with any negative thoughts and fears that I had around the future. It involves admitting what you are feeling, accepting that the fear is real but that there is a very realistic chance that the 'fear' may be unfounded and if the worst happens that you know in your heart you can deal with it. I admitted from the beginning to everyone how devasted I felt. In other words, I really tried to accept the grief I was feeling and to live through it BUT at the same time, I tried to just love this new baby who was beautiful and so easy to love. What I can say is everything you are feeling is alright and that 4 years on I still feel sad, but only occasionally. The pain will go and you will wonder why you felt such sadness.
niamh
Hi everyone. My 4 year old was trained last September but since Christmas 2010 started to have accidents again. He is suffering from constipation but we have forged on. He won't tell us when he wants to go anymore but when we take him, every hour or so, he usually goes. He is seeing a paediatrician about the constipation and we are using laxatives but he seems to have no motivation despite us using props and bribes. Can anyone out there advise us?
ariel mcclain
hi my name is ariel, i do not have a baby with down syndrome but i do have a sister with it. when i first found out that she had down syndrome i was a little hurt. we found out a few months after she was born. my little sister is now nine months going on ten months. she is the joy of our life and the most precious thing i have ever saw. she is going to her therapy and is developing great. the doctor says that her case of down syndrome is very mild so it shouldnt affect her that much. i would just like to encourage any one who has a baby or sibling with down syndrome to just show the child as much love as you possibly can because that is what make things a whole lot better for the child and for you. GOD bless!
justinjilg
Thank you for your comment. We very much appreciate your positive sentiments and wish you and your family the best.
Talin
Hello!
my name is talin and i have a very healthy 20 month old son and i am currently 14 weeks pregnant with my 2nd child. I took the first trimester screening test and it came back positive and the percentage was 1.49. At this point i’m an emotional wreck even though i try not to show it and am fearing the 2nd trimester screaning and possible amnio. I’m absolutely terrified and torn. I would not want to bring up a child with a disabilty in this day and age because of how cruel people can be at any age! Help…
Justin
Hi Talin,
I’m sorry you’re having such a difficult time. Please don’t worry about anything until you absolutely know there is something to worry about. As far as you not wanting to bring a child into the world due to its perceived cruel nature. That hasn’t been my experience with Teddy. People are typically intrinsically good although you will run across people who will obviously be cruel… That happens irrespective of whether your child has down syndrome or not. I love Teddy and wouldn’t change him at all. It is difficult to understand but there is a place in this world for people with down syndrome just as there is for people that have red hair or dark skin. you just need to be comfortable in yourself to be able to enjoy your child no matter how he or she turns out.
We have all been there — and whatever choice you make, you need to do what is right for you and your family. I wish you the best of luck.
If you find out that you are going to have a child with Down’s, don’t hesitate to send me an email and we can discuss further. I do not judge one way or the other about your very personal decisions.
justin.jilg@gmail.com
– Justin
Talin
Thanks for the quick response! i mean i’m just stunned the doc tells me these are your results but you have a 98% chance of having a healthy baby. I’m so confused, what does that 1.49 mean? is it high, should i really worry or not…..
D0lly
Have an eleven years old nephew with Downsyndrome,his speech is very poor,cant learn in a general school environment,he eat voraciously and have a low mental development.we are in Nigeria{Africa]need contact with any support group to help his development.
starlyn mcpherson
Hi
You need to take him to a school for downsyndrome children where he would be around other children like himself and you will be surprise of what he will be able to learn.
Ana
I am 22 and I am at 15 weeks pregnant the doctors made a test on me to detect downs syndrome and im kind of worried because it came back high risk for downs syndrome 1 in 71 chance…. can any one give me some advice this was my first test im going in monday for a sono
Julie
Hi. I am 40 and pregnant with my third child. During the 12 week NT, they had suspicion that this baby may have DS. Once blood work, etc came back – the risk grew to 1:5 chances. Today, we had our 2nd ultrasound. It’s a boy (our 3rd) & he has numerous markers for DS, including a heart abnormaility. They say the risk is even greater now. We decided to do amnio today, to confirm the suspicions. The results will be in in 2 weeks. We are scared but want to learn everything we can to be better prepared to raise this special little one.
Branon
Is ds hereditary???? just wanted to know cause I just foud out that my daughter has ds. Thank you for all your help
Nicholas, nv
Hey Justin,Me and my wife just found out our son might have ds, now me and my wife know that no matter what we will love him with every thing we have but I want to know is it normal to feel the way I do? I’m so scared and angry and sad and anything else I can think of and I’m trying to be strong for my wife cause I’m her rock? What will I do and how will I react to society when society reacts to my child?
melissa
Hi,
My fiance and I are expecting our little bundle of joy in 9 weeks. At week 20 we were told we were at an increased risk 1:200 of our little one having DS. I am only 29 so age really was not a factor. We opted out of the amino test as we didnt want to risk loosing the baby or being confronted with the results. We have been very positive over the past weeks but the thought is always in the back of my mind. Wwe will love our little bundle regardless but as the time is coming closer I am getting more and more scared. Not scared that we may have a child with DS but scared that we are not prepared. How will we feel? How am i going to react once the doctor tells us? You see in movies the docs alwasy saying ‘you have a healthy little girl’ what will the doctor tell us? ‘sorry your baby isnt healthy, he has DS?’ I have read quite a bit about DS and have looked into support groups but then feel guilty because perhaps our little peanut doesnt have DS?? Anyway, as I said 9 weeks to go… just nice to get a few thoughts off my mind.
sam
dear melissa ,my daughter has ds and she is healthy,we are so lucky that she has no life threatening problems.just because she has ds doesn’t mean she isnt healthy!!most of the mums i talk to (5)have had to have key hole surgery for their children before 2 yr old but my ebony is now 3 and has had no problems with her heart she had 2 holes and one healed up the other is the valve that should have closed up shortly after she was born,the doctors are not that concerned and will check up on her in April this year,the other mums that have it done say its wonderful and their children have picked up with their development , eating and activeness,hope this helps..my daughter is only mild,i thought that ds is ds but their is different levels…
Jennifer
I just found out the new today I am carrying a baby with DS. I don’t even want to say it out loud. I am 18 weeks pregnant, I have a 10 year old son , an 11 year old step son and a 9 year old step daughter. We feel devistated. My husband was so afraid of getting pregnant because he thought something would be wrong. He has been happy about the baby recently. Now he feels that his life is over. I am being honest. I do have a portion of that same feeling. I don’t know if he can cope with it. We are Christians but are human too and are suffering. I need help with this. I read the other messages and see how you say you are happy with your baby/child, I just don’t know how to deal with this. I am so sad. What do I do now? I have disappointed my family. You may say it is not my fault but still how can I deal with it?
Justin
Hi Jennifer — Thank you for your note — I have decided to respond on the frontpage of the site — Let me know if I can do anything for you!
Justin
angela
my 20yr old daughter has just been told she is high risk of having downs baby, why should she be at risk at such a young age
Stacey Hoover
I just wanted to say i am a 40 year old mom to a beautiful 19 month old boy. We just went to a genetisist 9 days ago and he mentioned down syndrome and sent us for blood work does anyone know how long theresults take to come back…this wait is so agonizing!! Thank you
jenna manning
hello everyone i just need y’alls opinion on this. i am 28 weeks pregnant. everything has been fine and normal throughout my pregnancy. i went in today for my last ultrasound & to do the diabetes testing well i passed the diabetes test but when doc did my ultrasound he said that my baby was measuring really small and in the 6 percentile,, she only weighs 2 lbs and 3 oz. and he said i might have to have her a month early so he sent me for another ultrasound with a specialist and didn’t tell me anything else. well i have been doing research on the computer today since i got home from doc and it says that when a baby measures two weeks behind that it could have iugr which is growth restriction, and could be caused from placental problems or a genetic disorder like down syndrome, i am 28 wks but baby is measuring 26 weeks. can someone please assure me that my baby is gonna be normal or is this a sign of ds? i am really worried.
Nicole
I am 25 yrs old, and 21 weeks pregnant. Today I was told by my physician that my blood test came back 1.432 of my baby girl being born with Ds. And I’m speechless. There are so many different things running through my head right now. I have a 6yr old and a 1 yr old who I parent alone. And being a single mother is hard enough. I decided to not go along with the Amnio procedure. But I’m just worried and scared that it may be to much to bare.
Dan
Hello… We just gave birth to a beautiful little boy on Friday. We had some markers for DS during the pregnancy (mainly the NT measurement) – but we opted against having an Amnio done. Turns out that he has DS. I don’t know much about DS – have some friends that have family members with DS and doing research on the web. But this is a wonderful website !!! I can’t tell you how reassuring it is to read others share their own experiences as parents… It reminds us that we’re not alone and that DS is far from being some of the thoughts and perceptions I had in my mind when we first found out about the possibility. I just wanted to thank the members on this site (especially Justin) for giving us some perspective – that it’s not the end of the world. Thank you…
Tesheka
Today I got a call from my ob he told me my baby was to small and there r some unknown fluids around him im 8mths pregnant should I be worried
terasa
Dan, i know completely how you feel. Almost a year ago from.the day your little man was born, my daughter was born. We had no idea she had DS because i did not take the prenatal screening and she showed no markers on any of the ultrasounds. About 12 hours after her birth her pediatrician came in to look over her. She talked to me about characteristics of DS and she wanted to do some blood work. And a few days later we got the confirmation. I prayed so hard that i wouldnt be the one to have the different kid. The kid with DS. But a year has gone by and i would not change her for the world. I thank God everyday i was chosen to have her. She really is the light of my life! God bless your family and your little man!
edna
i just got my results that i have 1 in 200 chance that my baby may have down syndrome. Im 19 years old and im 18 weeks pregnant,i dont understand that percentage is it high or not i need to know
Justin Jilg
Edna,
The odds of you having a child with Down syndrome are elevated. I would think about it this way. If you take a coin and write an x on the back of it and then you take 199 identical coins and place them all on the floor with the x side down — the chances of you having a child with Down syndrome are the same of you randomly choosing the coin with the x on the bottom. Of course it can happen but it most likely it will not.
Just relax and let things play out. No use stressing over something that you have no control over at this time. If something happens — you can cross that bridge when you get there.
Good luck and enjoy your pregnancy.
Justin
CHARMAINE BROWN
Two years ago my husband and I got the devastating news that our bundle of joy has down syndrome. I always thought he might have ds because of my age ( I had him when I was 39yrs). We are from Jamaica and pre natal screening is not offered unless it is requested by the parents and in most cases not everyone can afford it. Tagae has brought so much joy to our lives. We cannot emagine life without him. We have one other child and even though she is seven years older, they are very close. He was born with two holes in his heart which were closed when he was 10 months old.We tried prune juice and fruits on the paediatrician’s advice but he will have them in any form. can any offer any form of advice?
Charmaine
Shaun Collucci
Just wanted to know what the chances are or if you know anyone who has had NEGATIVE blood tests for ds and went on to deliver a baby with ds?
Selina
A week ago, I found out that i have a high risk(95%) of carrying a baby with DS. I feel devasteated as well as my husband, i dont’ know how to mention this to my family…. Both of us are not prepare for this yet, how do i over come w/ this??? I’ve been suffering everyday and feel so depress. Pls help……
Justin Jilg
Selina,
Please let us know if you need anything.
Justin
Rana
2 years ago today I found out I was pregnant. At 19 weeks my triple screen test showed a 1:64 chance of having a baby with Down Syndrome. I opted for an amnio which confirmed that 95% of my babies cells showed DS. I then lost my baby boy… I was 25 years old then. My husband was diagnosed with cancer 6 months later. We luckily had time to plan ahead and freeze some semen samples. In June my husband completed his treatment, and is thankfully in remission now. In August we did artificial insemination, it failed. In October we tried IVF. The doctor retrieved 8 eggs, 6 were viable, 3 made it to embryos. All 3 had abnormalities, but each one was different. My husband and I then did genetic testing and neither of us are carriers for anything. I am terrified to try and get pregnant again… I have been putting of my next IVF for quite a while now, but my husband is adamant that I try again. What are the chances that I end up with the same problem?
Justin Jilg
Hi Rana,
I hope you are doing well. Best wishes to you and your husband.
Justin
William
My wife had a 11 week NT scan and blood test. The NT thickness measurements taken during the scan gives 1.0mm, 1.0mm and 1.1mm. Also, the fetal nasal bones were visible and normal and the same with the measurement of femur and humerus. No spots in the heart either. So, we were very happy. Then we got the odds of down syndrome after the blood test results came back. It puts the odds at 1 in 73 (and the odds of having other genetic disorders at 1 in 1341). My wife will be 40 in April. I see that our odds of having a DS kid is higer than what is for her age (which is about 1 in 100 or 110). We have not met with the genetic counselor yet, but I am sure we will have to decide if we want to do amnio or not at some point. We feel we will be OK taking the great results of the NT scan, but the odds makes us wory a little. Any perspective on this would be appreciated. Thanks, everyone!
Justin Jilg
William,
I am sorry for the late response — are you and your wife ok?
William
Hi, thanks for your responses.
Kristie, I am so sorry for your loss. Prior to this pregnancy my wife went through 3 miscarriages (all between 7 – 11 weeks) in the past two years and all because of trisome13 or 18. We have a healthy three years old son and everyday we are thankful for the joys he brings us. It was very scary to try, time after time, and finally we are now in the 14th weeks with pregnancy. I hope everythings work out for you guys.
Justin – Yes, we are OK. Thanks.
We met with a genetic counselor and she told us that it is my wife’s age that makes the system produce the odds it did and not because something else triggered it. And, the odd of 1 in 73 means that our baby still have 98.6 chances of being born without DS. We are fine with those odds and actually we are ready to love and fine to raise a child with DS, if it comes to that. We are more worried about more severe genetic disorders. We decided not to do amnio at this point and instead opted to do a second sonogram at week 16 to look specifically for what they called ‘genetic markers.’ That, along with another blood test should give us a more accurate odds. In two weeks we would know.
Swee lai
Hi William, are u n your wife ok at 16 weeks? Any sonogram had been done and how is the outcome? Hope everything is fine.
Kirstie Stewart
All I can say is my husband and I lost our son Tristan at 26 weeks. We found out that day in the hospital that he was diagnosed with down syndrome. We buried our son on December 6, 2011 and it has torn our heart apart. He was so beautiful, my nose and his daddy’s lips. I just ask that you do not take for granted the beautiful life god blessed you with as life is too short and tomorrow is never promised. We are very scared to try again but ds or not our children will be loved! <3 11.29.11 Tristan Thomas Stewart 2lbs 4.5oz 13.5 inches <3
Marie
To all parents with children who happen to have DS, let me tell you a little story…
20 years or so ago, I was hitchicking with my then boyfriend (I know, bad idea to start with!), when a car pulled over. The driver, as it turned out, had DS. Of course, he should not of let us in his car (what if we had been bad people and tried to rob him, or something), and he was really quiet and not really talkative, but his driving was A-1 AND he was nice enough to stop to give us a ride, which was very much appreciated…
So, for the past 20 years or so, I’ve been really interested in getting to know these people. I’ve learned that they have something that is missing in most of us: a whole lot of humanity – they don’t pretend to be, they simply are, which is beautiful, refreshing and oh so necessary in our societies…
I am almost 40 and starting to try for a baby with my honey. I don’t even want prenatal testing. If I have a DS baby, it’s all fine with me (and my boyfriend)! For those who have already been blessed with such a child, love them for all they are and please know that others, around you, find them just as beautiful as their parents do…
All my best,
Marie
yolanda vasquez
Si alguien habla español yo tengo un Hijo y tiene ya 18años y son lo mejor que hay en nuestra vida
alicia
Okay so I have a question I am pregnant 21 weeks an my triple screen came back for me 1 in 19 chance of the baby having ds now I have had a baby one year ago with t18 (edwards syndrome) an he lived for 45 days an passed away this is my 5th pregnancy an I have one living child … Any one have any advice as if you think my baby has it by the chances of 1 in 19 ?
alicia
Also I’m am only 21 ill be 22 in July
Heartbroken
I’m 17 weeks pregnant and just had my ultrasound done. At that time the doctor said that my baby had a lot of fluid on the neck area and as well as only 3 heart chamers when we should have 4 chambers. I was sent to a specialist right away which also stated that the baby has a heart problem and a lot of fluid by neck and abdomen area. I also had an abnio test and saw the genetics counselor. I’m still waiting on the results but feel devastated and heart broken. I have many mixed emotions and dont know what to do. The doctor is saying its really bad and that the chances of the baby surviving are not good. I feel like such a bad mother for having this fear and sadness. Does anyone have the same problems or any suggestion? Please help…
roshni seenath
i have read a few of those comments and i am so relive that i am not the only one that have a ds child. my daughter was born with ds and i doubted the doctors. i did not want to hear about that, when she was born. i was so excited in having this second child. i never taught that anything would of happen to her bec i am person who don’t drink smoke and in good health condition. it was really unbeliveable. but seeing my child grow everyday makes me happy and she is progressing so good that i cant imagine my life without her. sometimes i feel like she is the only child i have and i love her so much and love everything about her. i cant see my life without her. i thank god for her good strength and health.
susan gutierrez
I have a daughter with Down syndrome who will be 4 years old. She is amazing person. She goes to preschool. She is learning the ABC, colors, shapes, and numbers. She loves to have books read to her and she even repeats the story as if she was reading it. Her language is delayed, but she gets speech services through school. My advice to any parent that found out that they are given a gift of a “special needs” child is to do research on the disability, look for resources in your community, and love them with all your heart. Put all the stereotypes a side and help your child reach his or her own potential. No one can predict what your child can do or will do. Your child will reach milestones when he or she is ready. My daughter is a blessing to our family and not a day goes by that I don’t thank God for her. Enjoy your baby!
Zoe
i have a ds cousin on my mums side of the family and a ds cousin on my dads side, whats they chances of me having a ds baby?
Justin Jilg
The chances of you having a child with Down syndrome are the same as anyone else. There is not hereditary relationship with most types of Down syndrome.
patrkq
my mum just gave birth to a baby girl….after the first 4 months i started noticing some peculiar features associated with downs syndrome….high frontal bossing, virtually no nasal bridge…although she has not been diagnosed of DS fear she is positive….any help or advice will be appreciated
donna
Hiya, im 38 years old and am 17 weeks pregnant with my 3rd child. I have 2 sons that are aged 18 and 14 that were born without any abnornalities. My babies nt scan showed up 4mm fluid on the neck, a nasal bone of 2mm and the blood test came back as greater than 1:2. I have told my eldest son and family and they are all great and supportive about it but have not yet told my youngest son as i am going for a heart and brain scan in a few days and dont want to worry him…any tips on telling eenage children? Thankyou xx