Very, very nervous about Downs

[Suzannah]

I am 38, 8w5d pregnant, and my mom just informed me that I do have a couple relatives with Downs. I am scheduled for an early ultrasound in a couple weeks (schedule prior to my mom telling me this).

I am really nervous about the results of this. We would choose to terminate if multiple tests indicated Downs, and this would be devastating. I never even thought about birth defects as a possible problem being "older" as a mom, and now I can't stop thinking about it. I have all of the hormones associated with pregnancy making it just that much worse.

I don't really know why I am posting, except that DH doesn't really understand the risk, and so I just don't talk to him about it, and no one IRL seems really safe to talk to when it comes to the possibility of termination (and I am not 100% sure that it's really safe here either). Just trying to unburden myself, I guess. I am not sure how to cope with this fear.

[Ambystoma]

I couldn't read and not post. Sorry you are so stressed out at what should be a happy time. If it makes you feel better, almost all cases of down's syndrome are not hereditary--ie just because you have relatives with it, doesn't mean there is a genetic link in your family. It's more related to maternal age--and 38 isn't old! Here is a short article that explains it pretty well.

I can understand how difficult it would be to discuss termination with people in "real life". I would feel uncomfortable, too. But, honestly, I would be leaning toward a similar decision, so don't feel like you're alone. Heck, I didn't feel comfortable talking about termination in this pregnancy with anyone but my DH since it was unplanned. The fact is, it's an option, one that some people overlook or don't want to consider for whatever reasons, but you have to do what is right for your family. At least you will be able to get testing done early.

Good luck. I hope everything works out for you.

[Taylah]

Good luck with the test.

[EricaDoula]

Good Luck with the testing, also please realize there is a high rate of false positives. Be sure to get the nuchal test too! Stay strong though this difficult time!

[FloridaBorn]

Thank you for sharing your valid, reasonable, and personal feelings with this message board

I have heard that the tests for downs as well as other genetic/birth defects can often be misleading... I would hate for any woman to terminate a healthy and wanted pregnancy just based on one test, so please get second opinions if any of your tests don't come back the way you would like!

Choosing an early termination to a pregnancy (for whatever reason!) is still (thankfully) your choice

[BlackSheepPDX]

I hope you can get some testing that will put your mind at ease sooner than later.

As far as termination, it's a huge decision, and a very hard one to make. Hopefully it's moot, and it won't be a choice you have to make, but the fact is we've fought very hard for the right to make a CHOICE. I, too, weighed my options, finding myself facing a VERY unplanned pregnancy, at 35. It's ok to be thinking about your choices.

Best of luck.

[Suzannah]

If our initial test results are not good, I plan on getting as many more as I need to confirm/deny prior to any action. I cannot even think about doing something based on one test result.

[olien]

I didnt have time to read all of the posts. Can you just do a CVS or amnio to get a definite result as early on as possible??

Hugs to you.

[RedOakMomma]

It is totally your choice. I raised/am raising two children with special needs, and I dare person not walking in these shoes to tell you that you're morally obligated to keep a child. Having a child with special needs is serious, serious stuff, and it changes your life in ways that people don't understand unless they're doing it, too. It changes your marriage, your career, your other children, your health, your emotional balance. Everything. Then again, special needs are always scarier at the start, with a lifetime of unknowns crashing into you all at once, then they are once you're doing the day-to-day.

If, IF, you get the news you're afraid of, take some time to think about it. Meet some families raising kids with Down Syndrome. Join chat boards or PM moms from MDC...do whatever you need to do to get a real feeling about what life would be like. To be honest, you might find it's okay. Or you might not.

Either way, it's a MUCH weightier decision that just choosing to have a neurotypical kid. And yeah, people will tell you that something could always go wrong, "with any kid!"...but it's not the same. I don't think people get that when they make quick judgements about abortion, or about what a person "should" do. It's easy to say what a person should do...a lot easier than actually living the life of the person who DOES do.

And remember...the chances of you having a child with Down Syndrome, or another chromosomal disorder, is pretty small. take a deep breath.

[coffeegirl]

Originally Posted by Suzannah

I am 38, 8w5d pregnant, and my mom just informed me that I do have a couple relatives with Downs. I am scheduled for an early ultrasound in a couple weeks (schedule prior to my mom telling me this).

I am really nervous about the results of this. We would choose to terminate if multiple tests indicated Downs, and this would be devastating. I never even thought about birth defects as a possible problem being "older" as a mom, and now I can't stop thinking about it. I have all of the hormones associated with pregnancy making it just that much worse.

I don't really know why I am posting, except that DH doesn't really understand the risk, and so I just don't talk to him about it, and no one IRL seems really safe to talk to when it comes to the possibility of termination (and I am not 100% sure that it's really safe here either). Just trying to unburden myself, I guess. I am not sure how to cope with this fear.

Just wanted to point out, like I think a couple posters already have, that Downs is a chromosomal abnormality; it is not hereditary. So I hate that you're stressing yourself out about something that is (if you look at the odds) only a very, very slim possibility.

As for having the baby or not depending on the test, my pov on the situation is that you already have the baby. The question would be, are you going to let the baby live or end the baby's life?

[MamaFern]

i just had to chime in here..
your post title bothers me, no offense.. because i can understand your worry, BUT.. there are many many wonderful children, and adults with downs (my brother included) and they have a right to be in the word just as you or i..i am in NO way pro life, but there is a huge difference between terminating a pregnancy because it is unwanted and terminating a pregnancy because the baby may look different (of course there are many more issues beyond how they look, medical conditions ect..) than a "normal" baby. babies born with downs do face major challenges (my brother had open heart surgery as a 3 year old), but they also have lives ahead of them and families that love them. my brother is in his 30's lives on his own, has a job and friends..went to college (and is still going) does sports, loves life.
when my mom had my brother there was no testing for these things, and when he was born the doctor told my mom that if she wanted to just leave him to die that was okay. can you even imagine? my mom was horrified. she said he that he looked kind of funny, but she loved him at first sight. and the doctor told her that you cannot breastfeed a baby with downs, but she did anyways..she was told so many crazy things and she proved all of them wrong. so as someone touched by the life of many down syndrome children and adults, i just have to ask you to be aware of the ramifications of your post...because you very well might get others who feel as i do.

of course it is your choice, and i hope for your sake that you do not have to make that choice.

funny enough, i never once worried about my children having downs, i guess i knew that no matter what, i would love them like my mom loved my brother.

[pacificbliss]

95% of all Down's syndrome cases are not hereditary, they are linked to maternal age. AND 38 really is not old.
You should meet with a genetic counselor if you can and have them go through the risk factors. I think you can have CVS as early as 8 weeks if necessary but most places do it between weeks 14 and 16.
I hope you get some good news from the tests soon so you can enjoy your pregnancy.

[AustinMom]

I thought the tests for Downs were not diagnostic, but only said if you are at a greater risk than the general population? If this is true, I personally opt of of the testing, because the test doesn't give me all that much info, and I wouldn't change the course of the pregnancy based on a risk factor. This is why I think there are a lot of false positives.

I think the Sears family has a son who has Downs and they said that their family has learned to love in such a wonderful way, and they could never picture life without him in the family. My brother has Downs, and he as well lives on his own, etc.

There are tons of groups for support during pregnancy and after pregnancy to support you with raising a baby with Downs.

[sunshadow]

I was stressed about downs too after getting a "positive" from testing. I felt much calmer about it all when I learned that there are waiting lists for people who want to adopt a downs child should we have decided it wasn't something we could handle. Just thought I'd mention that!

[Suzannah]

It was not my intention to offend ANYONE with my title, my post, etc. I apologize.

I don't want this to turn into a pro-choice/pro-life debate. I understand both sides, but my intention is not to change anyone's mind here, and my mind is firm on the subject as well.

I know who I am, I know who my family is, and I know that having a child with special needs is something that I don't feel we (as a family) are mentally, emotionally or financially able to handle. I have friends who are raising special needs children, and although their kids are fabulous and shining, I know that it has changed their lives in ways they could never have imagined, both positive and negative.

I appreciate the feedback and support. I was definitely leery of posting this here, for pretty obvious reasons, and I appreciate that even those of you who disagree with the undertone of my topic were respectful and articulate in your disagreement. I guess there is a reason I have been here for so long...

[CorasMama]

Austinmom: the nuchal translucency scan and combined screen (bloodwork) are just screening, you're right. They only look at the markers and give a percentage chance of the fetus having chromosomal abnormalities, like Trisomy 13, 18, and 21 (Down's). However, a CVS or amniocentesis would be diagnostic, as they are actually looking at the chromosomes, and can see abnormalities.

[jennica]

I don't get the "38 is not that old" comments? She isn't asking if she is old, she is concerned about her actual increased risks of having a baby with down syndrome. Here is a link to your risk of down's based on your age: http://downsyndrome.about.com/od/dia...atagechart.htm At age 38 there is a 1 in 175 risk of down syndrome and a 1 in a 102 risk of any of the trisomies. It looks like this is a prenatal risk, live births of children with trisomies are less likely because they miscarry more frequently. If you are this adamant about your decision, I suggest you skip right to the CVS and get it done as soon as possible so you can have a for sure answer sooner.

[scarletjane]

I just wanted to commend you for the honesty it took to post something that you feared might not be "safe." I think that one of the greatest things about a place like MDC is that feeling that we can come here with things that are uncomfortable to talk about with our real life friends or family and that we'll hopefully all have a safe and supportive environment in which we can express ourselves.

You have the right, thank goodness, to make any choice that is best for you, your family and your children.

And although I think it's a good idea to at least be thinking about what your actions will be given certain circumstances, I think you'll really need to just take a day at a time with this. As someone else has said, it may make sense to just go ahead with the amnio, since that is a more definitive test and will put your mind at ease more readily than something that is more statistically-based. Whatever happens, I hope there is a good outcome and that your mind is put to ease soon. It is no fun to have added stress in a pregnancy. Sending you hugs.

[Tofu the Geek]

Originally Posted by jennica

I don't get the "38 is not that old" comments? She isn't asking if she is old, she is concerned about her actual increased risks of having a baby with down syndrome. Here is a link to your risk of down's based on your age: http://downsyndrome.about.com/od/dia...atagechart.htm At age 38 there is a 1 in 175 risk of down syndrome and a 1 in a 102 risk of any of the trisomies. It looks like this is a prenatal risk, live births of children with trisomies are less likely because they miscarry more frequently. If you are this adamant about your decision, I suggest you skip right to the CVS and get it done as soon as possible so you can have a for sure answer sooner.

It seems to me there *must* be more to it than just age, else what would be the point of the screening tests to determine your risk? They wouldn't be needed, they could just give your number off the chart you posted. Since they don't do that, it seems that age can't be the only consideration.

[MamaFern]

i'm glad you did post this. and thank you for not taking offense to me being protective of people with downs. all of my life i have had to defend my brother, so i guess its just instinct now.
your reply was well said and well thought out

Originally Posted by Suzannah

It was not my intention to offend ANYONE with my title, my post, etc. I apologize.

I don't want this to turn into a pro-choice/pro-life debate. I understand both sides, but my intention is not to change anyone's mind here, and my mind is firm on the subject as well.

I know who I am, I know who my family is, and I know that having a child with special needs is something that I don't feel we (as a family) are mentally, emotionally or financially able to handle. I have friends who are raising special needs children, and although their kids are fabulous and shining, I know that it has changed their lives in ways they could never have imagined, both positive and negative.

I appreciate the feedback and support. I was definitely leery of posting this here, for pretty obvious reasons, and I appreciate that even those of you who disagree with the undertone of my topic were respectful and articulate in your disagreement. I guess there is a reason I have been here for so long...