down syndrome

Newborn with down syndrome - a newborn baby with down syndrome
United States
January 23, 2007 2:40pm CST
I just found out this morning that my initial ob blood work came back + that my baby may have down syndrome. I have an appointment tomorrow for an amnio, ultrasound, and genetic screening to find out for sure. I already have 2 healthy children, 1 has albinism which has caused visual impairment, but he is otherwise healthy. I am very scared, has anyone else here been through this before? Did you baby have down syndrome? What did you do? Any experience will be greatly appreciated. I am so scared.
9 people like this
46 responses
• United States
23 Jan 07
I had that blood work test done when I was pregnant with my son. It came back positive & then after lots of additional testing & found out he was fine - I found out that test is actually very unreliable. I do know that an amnio increases your risk of miscarriage, so I didn't do that test. But they checked him out with several u/s over the next few days. My daughter was born with NEC & lost 70% of her small intestine, it is emotionally hard to see your baby suffer. It's not the same as downs syndrome, but I can tell you that she requires more care than my son & having her was just like having my son in the sense that I had to learn all these parenting things, but with her I need to learn more. I hope your additional tests come back good. (((hugs)))
• United States
23 Jan 07
thanks, I hope it was a false positive, I am kind of skeptical about the amnio as I read more about it, tomorrow I am going to ask if they can do the other tests without the amnio, I would like to know if the baby has down syndrome before his/her birth, so I can prepare my self, my son, as well as our other family, but it is not a necesity to know, it wont change the fact that I am going to have this baby no matter what and will love and care for him/her no matter the out come. I am scared about the risks the amnio carries, Im scared the baby may be perfectly healthy and the amnio causing me to lose him/her, I worry way too much.
1 person likes this
@Bev1986 (1427)
• United States
23 Jan 07
Yes, I agree with the other poster... just wait. I've heard of other people thinking their child would be born with Down's and ended up being a perfectly healthy baby. One of my dear friends has a boy who is 5 with Down's. He is an absolute joy. He is their 4th child and is probably the best thing that ever happened to that family. Yes, it was a shock at first, but they've all learned to deal with him. They can't even imagine their lives without him now. My thoughts and prayers will be with you.
• United States
23 Jan 07
thank you
• United States
24 Jan 07
First off I would like to start out by saying you and your family are in my thoughts. I too had my blood work come back with a high marker for Down Syndrome, and believe me i was scared and I cried and i went through all the same thoughts and fears that I am sure you too are having. I had a lot of good friends who were there for me and I did research on both the test and Down Syndrome because I wanted to be as prepared as possible for all outcomes. One of my good friends told me "A child with Down Syndrome is a very special child and God would only give such a special child to a special family who he felt could love and care for him/her in a special way" when I was told this i wasn't completely relieved but it help start to put my mind at ease with it. I went into my Ultrasound/Genetic Screening with all my fears and worries and was nervous the entire time. Durring the Ultrasound the technician checked everything and never once had any look of concern When the Dr came in to translate the results he told us that from the ultrasound results it seemed we were having a healthy baby girl, he offered the Amnio but then advised us that the risks of the Amnio causing problems out numbered the risk of My daughter having Down syndrome we opted out of the Amnio and now live with the joy that we have a healthy baby girl. Talking later to my OB I found that the blood test they have is well known for giving false markers or False + and it can often give false results in the other direction so the results could of came back - or with low markers and the patient could have a child with Down syndrome. I was told to take the results with a grain of salt and to wait on the results from the ultrasound or Amnio depending on how far you want to talke it. I hope this helps I too was in your shoes and please remember that I will keep you and your family in my thoughs.
@MrNiceGuy (4147)
• United States
23 Jan 07
I have worked pretty extensively with children with both autism and down syndrome. Down syndrome is of course troubling on the parents and the child, but to be honest, down syndrome kids are usually SO sweet. They are very innocent, very loving, and very trusting. They are usually fairly developmentally delayed, but I have hardly known any that had behavorial or real communication problems like autism or mental retardation.
2 people like this
@anja31 (708)
• Canada
23 Jan 07
I feel sorry for you. I really do. I dont have any experience with down syndrome. However, no one in my family has that I feel sorry for you. I wish you all the good look
@rosey3223 (1569)
• United States
24 Jan 07
I actually had to go through that with my youngest who is now going to be a year old this month...my fiance and I stressed over it REAL bad. The lady over the phone did try to help by saying that they have had results like that before that actually were a plus/negative, which means that the result came out positive for down syndrome but that the baby comes out "normal", so it is actually negative. But let me tell you that we stressed for months over it, even cried, but then I put it in God's hands. I was actually seeing 2 doctors, the second was a specialist with pregnancies that dealt with cases like ours (yours and mine), and she always checked the measurements and weight for any possible signs. Then came time for getting tests done, like the ones that you are going to have done, and for some reason the needle would not go through the placenta, and this lady tried as hard as she could but it wouldn't budge...she even went as far as to go through the other side of my belly, but after the first try, I took it as we were not suppose to know (shoot, I gave it to God to worry about and to know) and that everything was going to be fine. So, she kept "checking" every week and when I finally gave birth, I gave birth to a perfectly healthy baby boy that was, and still is, so stubborn that he didn't want to breathe when he came out. Good luck to you, I hope and pray that you have a case like mine and that your baby comes out just fine. Keep me updated and let me know how the results are.
1 person likes this
@rosey3223 (1569)
• United States
24 Jan 07
Oh shoot, I said "plus/negative" and I meant to say "false positive"...on the blood test that said that my baby was positive for down syndrome. SORRY!!!
1 person likes this
• United States
25 Jan 07
Thank you for sharing your experience :) ***** Good News****** From my initial blood test our risk of having a baby with down syndrome was 1 of 206, as opposed to the normal risk of someone my age which is 1 of 1146 (somehwere there about). After the genetics counselor reviewed our family history and stuff we decided to get the pinpoint ultrasound and see if it showed any signs of a ds baby before jumping into the decision of an amnio. After the nurse and doctor closely reviewed the ultrasound they found that the risk with doing an amnio was higher than the 1 of 412 risk for us to have a ds baby. So we have a 1% chance of having a baby with ds, and we are having another girl:) I want to thank all of you for your support and prayers, they all mean so much to me. I was so scared and now to realize it was over nothing feels a little silly, but oh well. Although I feel we are still not in the clear completely, as our risk of 1 of 412 is a slightly higher risk than that of anyone else my age of 1 of 1146, I feel comfortable with our numbers. Thanks again everyone.
1 person likes this
@rosey3223 (1569)
• United States
26 Jan 07
You are very welcome, and that is really good news....congrats on finding out that you are having a girl. I was like you in that I felt very silly after knowing that my baby was just fine. I'd really like to know though why there are so many false positive results coming back for down syndrome. It seems as if the majority of a lot of women that have been pregnant or gave birth in the last year had the same scare as us!! It really makes no sense when you think about it!! But once again, congrats on the very good news!! And keep us updated!! When are you due?
1 person likes this
• United States
24 Jan 07
First of all, it could be a false negative. Those things happen all the time! So try not to make yourself sick over it. Secondly, do you know what you would do if it was discovered that the baby did have Down's? Would you keep it or get an abortion? If you would get an abortion, then get the tests done. If you know that you would keep the baby anyways, why even bother with the tests? Unless it's just a way of preparing yourself for when the time comes. I'm afraid I don't have a lot of advice on it, other than just be educated on the symptoms and the special needs such a child would have to have. The more you know, the more power you have over the situation! Good luck with this.
• United States
24 Jan 07
My husband and I have discussed it and we are going to keep the baby no matter what, but I would still like to know so that we can be prepared and help our family to be educated and prepared.
@birthlady (5613)
• United States
24 Jan 07
I'm so happy you are just loving your baby no matter what! I posted a link to a support group for you, just in case.
1 person likes this
• United States
23 Jan 07
I've always heard that test is unreliable. I think that is the test that my doctor recommended taking. He's had tests come back positive and the patients have chosen to make a drastic decision without going for the test that is more in depth. ((HUGS)) Keep thinking positive thoughts. Even though I'm sure that is SO hard to do!
1 person likes this
• United States
24 Jan 07
I hope that it is unrealiable, to a degree, atleast in this aspect
• United States
24 Jan 07
Good luck with everything, and if it comes back positive, I hope you and your loved ones can make everything work and have a happy prosperous life together.
1 person likes this
@tiff1496 (570)
• United States
25 Jan 07
Glad the hear everything is going to be ok. Congrats on your little girl!
1 person likes this
• United States
26 Jan 07
thank you
• United States
24 Jan 07
Is this the Alpha Fetal Protein test? Those have such a high rate of false positives (or increased risks that turn out to be nothing), that I would definitely not worry until you've had the other tests done. Though I know as a parent it's impossible *Not* to worry. Hang in there, and please let us know the test results. I'll keep you in my thoughts.
• United States
24 Jan 07
it was a triple screen or something like that, Im not completely sure, but hopefully we will find out something in a few hours, (it is 6 am right now and my appt is at 8:45) Thanks for your support
@yorb24 (2181)
• United States
24 Jan 07
No I haven't been through something like this but I wish you the best of luck. No matter what, I'm sure you will be happy that you have brought this beautiful child into the world. If he or she does have down syndrome, I'd try to look up as much information as possible about this on the internet. It's a wealth of information. Btw, I am recently watching Life Goes On (just bought the dvd set) and the young man on there has Down Syndrome and he's a terrific actor. I've read an interview on him and people told him he wouldn't be able to act because of his disability but he defied the odds. Good luck!!
• United States
24 Jan 07
thank you for your support, as the time gets closer to my appt I am getting more and more nervous, I haven't been able to sleep all night because of my nerves, so now I have about 3 1/2 hours until my appt, and about and hour and a half until we have to leave (my appt is at UAB hospital and it is in Birmingham, an hour away from us with out traffic but we will be hitting rush hour traffic in both our town and Birmingham)
• Philippines
24 Jan 07
just pray that things will be alright. but just the same if ever he is down syndrome its not the end of the world, my best friend found out at 5 mos in the womb of her wife that their first born would be down syndrome, they read books and prepared themselves for the baby. Now the baby is 15 years old and doing good in school, very active and a gift to us, an inspiration
1 person likes this
• United States
24 Jan 07
thank you, sis your friend and his wife have any more children after their son? If so did their other children have down syndrome?
@mari61960 (4895)
• United States
24 Jan 07
I don't have any children. But one of my best friends is a woman with down's syndrome. I firmly believe that people with down's syndrome are angels sent from god. I wouldn't wish it on anyone naturaly, but I would feel honored to be the parent of a child with down's syndrome. I have worked with disabled children and adults since I was 14. My cousin adopted a baby with down's syndrome. She was found in the trash 1 day old. Just last year she attend her junior prom with two dates, and the senior prom with another date. She now lives in a staffed apartment and works full time in a video store as a greeter. She's having more life than I had at her age...lol Don't worry, be happy God will see you through.
• United States
24 Jan 07
that is sad that she was found in the trash, but I am happy to hear that your mom had a big heart and took her in, thank you for sharing this with me. I am very glad to hear that she is living a very close to normal life.
@getnbuy (1314)
• United States
24 Jan 07
I had some friends that were told that their baby would have Downs, but she was born healthy. I have other friends who love and enjoy their Downs children. I once gave music lessonsto a girl with Downs. I think if you approach it with faith that it will be alright, and you can cope with whatever happens, you will be ok. Be strong. I will pray for you!
1 person likes this
• United States
24 Jan 07
thank you
@Calais (10900)
• Australia
24 Jan 07
Would you love it any less if you knew ? Would it make a difference ? Would you keep it anyway ? Basic questions that I was asked when I was going for my amnio test. To me it would not have mattered in the end. I just didnt want to take the risk of the test if it didnt matter anyway.
1 person likes this
• United States
24 Jan 07
no, it does not matter, my husband and I discussed things a little this afternoon after I did some research on how risky an amnio is, and we both feel that no matter what this is still our baby and we will love him or her the same, we have both decided to avoid the amnio if we can (if there are no other possible severe problems), and try to find out through ultrasound and other genetic screenings, we both feel that knowing before birth is not worth the risk of losing our baby through amnio, however if we can find out through one of the other tests we will be glad as hopefully it will put an end to or worries or so we can prepare and help our family to be ready and educated.
@cripfemme (7715)
• United States
24 Jan 07
Get a copy of Choosing Naia by Michael Zukoff. It's an amazing book, about a biracial little girl with Down Syndrome. Many good friends of mine of have the disability and I just adore them, so let me know if I can be of any help as I am a disability rights advocate and a disabled person myself.
• United States
24 Jan 07
thank you, I will definately check that book out
@tiff1496 (570)
• United States
24 Jan 07
I'm so sorry your test came back positive. Please know, it can be wrong. How old are you? I know if you are over the age 45 you have a higher chance of having a baby with DS. You will be in my prayers. Good luck. Let us know how your appointment goes.
1 person likes this
• United States
24 Jan 07
thank you for your support and prayers, I am only 21 so this is a big shock
• United States
24 Jan 07
My bloodwork also came back + for downs syndrome when I was pregnant with my daughter. I was 33 at the time of my pregnancy and the doc told me that the older you are, the greater the chance, but also your bloodwork may come back + and it's nothing. I did not get the amnio because i figured it didn't matter what the baby came out as, I would love her. i just started learning about Downs in case. She came out just fine and nohting is wrong with her. I wish you luck..I hope that little baby is as healthy as can be when he/she comes out. Like I said, just get info so you can be informed in case your baby does have down's at birth. pray (if you do that) and think positive. like i said, if you are an older mommy, then the results could very well be wrong. i would love to talk to you more if you need to. i think i will iinvite you as a friend. good luck.
1 person likes this
• United States
24 Jan 07
Thank you for your support, I have heard that it is more common in mothers over 35, I on the other hand am only 21, I am a very young mama. I am praying, as well as my mom & her church & friends, and my mil, her church, and friends. I have done some research on amniocentesis and discussed it with my husband and we are going to try and avoid having the amnio, if we can not find out via ultrasound or blood work then we do not need to know until birth, as it doesn't matter we will love and care for our baby no matter what, although it would be nice to know before so that we can prepare and prepare our family.
1 person likes this
@cyntrow (8524)
• United States
24 Jan 07
A close friend of mine had a child who in-utero was found to be a downs baby. He turned out perfectly fine. I am not saying this to get your hopes up. Just that it might be a possibility. Barring that, if you know you want to have the baby, many, many downs children can lead normal and productive lives. THey hold jobs. They can live on their own. My parents are annual donors to the Special Olympics. Part of the donorship is physical service. I was a special olympic "hugger" when I was just a child. Yes some downs children are worse off than others. Some don't live very long. But often, they are just slow, and the biggest problem is facial deformity. THis is only a problem with other children. I have a feeling that you are the kind of person who can keep the child upbeat despite what some kids might say or do and keep the child's esteem up regardless of his or her difficulties. www.ndss.org is an excellent reference site to begin with. It contains some great links and some support organizations. Best of luck to you. I know you will do fine and your child will flourish, despite any disabilites he or she may have.
• United States
24 Jan 07
thank you, your post is a great help
@lvhughes (545)
• United States
23 Jan 07
i wouldnt get to excited until the baby gets here. my sisters test all come back that something was wrong with her baby but when it got here it was very healthy. but being scare is normal.with my oldest son my ultrasound show swelling on the brain. we had 12 ultrasounds. at 8 1/2 months i was induced so that the doctor could have specialest standing by just in case. luckly there wasnt nothing to worry about.Good luck.
• United States
24 Jan 07
im glad everything was ok, thanks for your support