Post # 1
I’ve been debating about writing about this. Please be kind. It’s not the greatest news and I’m having a slightly hard time getting my head around it.
This is my first pregnancy- ever. I’m 35.
The utlrasound came back with fantastic results- no abnormalities. The blood screen test however- not so great. I have a 1:13 chance for a baby with down syndrome.
I asked a couple very close friends about their experience with the blood test and both said they did not take it. One- because she knew she would be older and her chances would be high anyway. The other- it took her a long journey to get pregnant and anything that came up wouldn’t matter anyway- so she didn’t take it.
I guess- I’d just like a point of reference from others on their experience with this.
It’s too late for the cvs for me. So the only other option would be amniocentesis to know for sure. Experiences?
I have a consult today to see if I want to go through with this test.
Originally- I thought I would want to know from screening in case I would need to be prepared for a baby with complications. Now- when the doctor first gave the news- I didn’t want to be pregnant anymore- and that is eating me up with guilt. I had ideas in my head that a mother would love any child- but now- I don’t know if I could.
Any experiences with these results? I’m feeling drained- constantly thinking about this.
Post # 2
I do not have experience with this myself, so please take this with a grain of salt, but maybe it could offer some encouragement.
My mother was 38 and pregnant with me. The test she took came back positive for a down syndrome baby, so she had to do the amnio. At the test, they determined I didn’t appear to have down syndrome.
I guess I just want to add that it doesn’t always mean your child will have it…hopefully some other bees can join in here and maybe offer some advice from their experience!
And FWIW, I’m 24 weeks pregnant now and was a nervous wreck about the chance of DS. Please do not feel guilty, being pregnant is already a lot to deal with!! I imagine my initial reaction would be the same as yours.
Post # 3
I have no advice, I just want to give you a virtual hug. I dont think you need to make any decisions until you are ready. I’d also forgive yourself for your feelings, it’s okay to feel sad and disappointed when you get news like that. Maybe give yourself a little time to experience your feelings so you can hopfully feel less overwhelmed and decide how you want to deal with the experience.
Post # 4
So I have one child and we had the downs screening. Thankfully we had a low risk.
At the time, had it come back high I would have had the amnio, even with the risks as I’d like to know.
I might get a lot of hate for this but anyway… I am hugely pro choice and I feel very strongly that this needs to be your decision and you need to make the right decision for you and you have every right to do what you need to do…. but…. if I did know that the test was positive, I probably (and its a highly likely to probably) would terminate the pregnancy.
All this said – that is just what I would do, not what YOU have to do.
Post # 5
As someone with an uncle with DS and as someone who works in the support field…all i can say is that a DS diagnosis doesn’t mean any one thing for everyone. There are different levels of functioning and ability and plenty of people with DS get married and gold paid jobs and are awesome people just like anyone else. A disability is only one part of who someone is, not the whole picture and it doesn’t have to be an insurmountable limitation.
Personally, I don’t believe in terminating an otherwise wanted pregnancy because of a test result that may or may not accurately confirm a disability. You wanted a baby and you will get YOUR baby, whoever they are and end up being. And I hate to say it, but there are other disabilities that don’t show symptoms or get diagnosed until well after birth. Would you not want your baby then?
It is something I understand people consider – these are just my thoughts.
Good luck to you. I would encourage you to do a wide variety of research on what day to day DS looks like, and see that it isn’t one size fits all.
Post # 6
Hi Bee, I know in my state there is a two part blood test for DS and a few other things. The first draw is around 12 weeks and the second is around the anatomy scan… 18-20ish weeks. Any chance you can have a more extensive blood test before doing the amnio?
Post # 7
No experience with it, just here to support you. If it were me, I’d get the amnio – I would terminate if a Down’s Syndrome diagnosis was confirmed. Something like 90% of people do in that situation. It takes a special family to raise a special needs child. It’s okay if you don’t think you can handle it OR just don’t want to. All the love ❤️
Post # 8
- Wedding: December 2019 - Paris, France
What on earth is there to feel guilty about? If I was at risk to have a baby with downs I would def do the amnio. I would even go as far to say as, I would abort if I was having a baby with downs. I know what I am and am not capable of and there is no guilt here. Yes, I will be sad. But guilty? nah.
Post # 9
you could do NIPT (like materniT21) to check for downs without the risk of an amnio. That only requires a blood draw from you. Unlike the screening which is looking at YOUR risk factors, this actually finds the cells from the fetus IN your blood to do testing on. You need to be 10 weeks or more for this to be an option, and the results take abotu 2 weeks. The risk to your fetus is no more than any other blood draw, unlike amnio. Just an option. There are a few brands that do it and I think even if your doctor doesn’t offer it you can talk to the different brands and they may be able to point you to a local lab that would do the draw and send it to them.
Post # 10
It’s definitely worth asking your doctor about the NIPT. Results take 7 days. It’s still a “screening” test, so not perfectly accurate, but the risk of a falsely high risk result with the NIPT is much lower than the NT scan plus bloodwork.
Also, remember that there is a 12 in 13 risk that your child DOESN’T have Down Syndrome.
In the meantime, big hugs. I know this is stressful.
Post # 11
Thank you bees.
I am unsure of other tests available as I was only able to talk to the consultant a few minutes Friday- and she suggested coming in for an in person chat about all possiblities. She only mentioned the cvs and amino- I will ask about the others mentioned.
My husband and I haven’t yet decided what to do if we take the test and it comes back positive. I however think I am leaning more one way than the other.
Personally I think I want to take the amino test. I don’t like to gamble and I want a ‘yes’ or a ‘no’.
I was reading other forums and some of the suggestions were to look at it as a 12:13 chance I can have a baby without Down Syndrome. Which is a very good point. But it’s hard for me to see it that way.
Post # 12
This is fairly cultural. In Iceland nearly 100% of those who test positive for downs terminate. In Denmark the rate is 98%. In France it’s 77%. In the the United States it’s around 68%.
Only you can really decide what makes sense for you.
Post # 13
I had a friend whose blood test came back positive for downs but negative when amniocentesis was done. She is my only friend who got amnio and said it was fine (caveat: she is a doctor so medical stuff doesn’t tend to scare her). She would have gotten an abortion had the amnio come back positive. Her son is 6 years old now, neutotypical, healthy, and a wonderful little guy. So I recommend getting it before deciding to terminate. Hugs, Bee!
Post # 14
what test did you get done? Just standard genetic screening? I had the same 1 in 13 result when I was pregnant with my daughter. I ended up going to see a genetic specialist and had super detailed ultrasounds and further testing. They did a “Panaroma” blood test (99% accurate) and my results came back as 1 in 10,000. We opted to try that test first, and then the amino if needed. The doctor said that the standard genetic screenings are outdated and often show false positives, especially with baby girls. As hard as it is right now, try not to panic. Just ask as many questions as you can, and ask for a better blood test!
Post # 15
Don’t go with another “odds” test. Take the amnio and get a firm yes or no. You really cannot make a decision until then. Good luck.