Downs syndrome?

[Kiwi]

A friend of mine has learnt that her baby is most likely going to have downs.
She is devastated, she feels as if she must have done something wrong or that she is being punished.
She has had people tell her to "just get rid of it"

Some of her so called friends have already stopped hanging out with her (I guess its not cool or whatever?) but both her and her husband are beside themselves. Yesterday was the first day in a week she made it out of bed.

Does anyone on the board have a relative with downs?
Can anyone offer me advice on how to be there for her... I was raised that whenever a crisis happens you take food over so I'm making them dinner tonight and taking it over.

I want to be a supportive friend and let her know that everything will be okay whatever happens.

[blas]

Unless it runs in her family or the father's family, it's not their faults. Well, and even then, I wouldn't use the word "fault".

[Kiwi]

She kept using words like that Blas, I spend two hours with her yesterday while she sobbed her little heart out. "What did I do wrong?" she feels it must be her fault, she cant accept that it is simply the a genetic mutation.

She had to go have a test and she said everyone else was either over 40 or had tracks up their arm, shes devastated because she did everything "right" and cant understand why this is happening.

I'm just trying to help her through it

[Kheldarson]

Just keep being there for her. And keep reminding her it's not her fault. My uncle has cerebal palsy and down syndrome as well I think (he's my mom's older brother and has lived his entire life in a home. I've seen him maybe a half-dozen times in my life). In his case, a lot of it had to do with the fact his umbilical cord got wrapped around his throat. Not his fault, not grandma's fault.

What you may want to help her with as well is her options in caring for her child.

[blas]

My coworker Mary is currently pregnant with her first child (she never planned on having children) and since she's 40, she had to have a test done (something where they can test the amniotic fluid or something? I think they do it on every pregnant woman over a certain age, but younger women can have it done if they want it as well). That doctor had her SO riled up that just because of her age, that baby had a 99.9999999999% chance of having Downs and blahblahblah....honestly, I'm surprised Mary didn't miscarry in the week leading up to that test and until she got her results, that doctor had her freaking out so badly.

Her baby is going to be fine, as far as the tests showed.

[Greenday]

She had to go have a test and she said everyone else was either over 40 or had tracks up their arm, shes devastated because she did everything "right" and cant understand why this is happening.

Downs syndrome happens completely by chance. It's caused by extra genetic information being attached to the 21st chromosome if I recall correctly from genetics last semester. It's not really a genetic trait, so it's not something you can predict. It just happens. As far as we know, it's not caused by drinking, smoking, unhealthy diet, etc. etc. It just happens and there was nothing your friend could have done to change a thing. It is in no way your friend's fault.

[bookworm]

I have no family experience with Downs syndrome, but I grew up with a boy who had it, and have known several other people over the years that had it.

I can understand your friend freaking out, I'm almost 39 and hubby and I are trying to decide whether to try to get pregnant. The chance of a Down's baby is one of the reasons we're hesitating - simply because of our ages, if the child needs lifetime care what would happen to her after we die?

Really though, many Down's children live pretty normal lives. And you will never meet sweeter or more kinder people than Down's children, at least in my experience.

Your friend needs to talk to her doctor, and maybe even a therapist or support group, just to get a realistic idea of what to expect with a Down's child. Maybe they can even convince her that it's not her fault.

[Buglady]

Greenday is correct, Down Syndrome is NOT a familial trait. It happens completely by chance in about 1 in 800 pregnancies. While the risk is higher for older mothers (higher chance for those particular pregancies), 80% of children with Down's are born to mothers under 25.

YOUR FRIEND HAS DONE NOTHING WRONG WHATSOEVER. (Sorry about shouting, but this is important!)

There are some wonderful support groups out there for families, including prenatal support. People with Down Syndrome have excellent chances for health and education these days - a far cry from thirty years ago. That is not to say things will be easy by any means, but there ARE lots of resources and there IS hope.

Depending on where you and your friend are:

US - National Down Syndrome Society: http://www.ndss.org/index.php
Canada - Canadian Down Syndrome Society: http://www.cdss.ca/
Britain - http://www.downs-syndrome.org.uk/

(EDIT - oops! I should have read your location! New Zealand : http://nzdsa.org.nz/)

Edited again to fix link! You'd think I would remember the CDSS address considering I did a bunch of writing/editing for them once upon a time... heh. oops.

I would encourage your friend to get in touch with the local chapter of one of these groups as soon as possible. There are printable info sheets on all of the websites that you can give to the friends who are criticizing her (preferably wrapped around something solid and applied forcefully upside the head...).

I know several young adults who have Down Syndrome - my sister's youngest brother-in-law being one of them. They are PEOPLE just like the rest of us, with hopes, dreams and values of their own. Yes, they are limited in some ways, but that does not make them less valuable or less worthy of respect, dignity and love.

[Kiwi]

Lol I got the Country dance and song society for that second link... but Im sure google could find the right one.... wierd

I told her yesterday that she hasn't done anything wrong and that shes needs to allow herself to go through the seven stages of grief. She is being so hard on herself I wish I could find a way to make it better.

She went to a birthday party the day she found out and some idiot made some remark about having to shave their cat and now the cat looks like its retarded with downs....everyone laughed she said she felt like she had been punched in the stomach.

[BarbieGirl]

From the sounds of it she only had the ultrasound test, since there is just a chance the baby might have downs. Personally I don't hold much sway with that test. All they do is measure the distance between the spinal cord and the brain and if it's 6mm or higher (I think) then your child is likely to have downs. She might want to think about an amniocentisis to get a more acurate reading. There are a bunch of factors that could have altered the ultrasound results, how old is the doctors equipment, was the baby turning/moving and they couldn't get an accurate picture to measure. And some doctors are all doom and gloom and throw the bad info out at first because they don't want to get the parents hopes up.

[iradney]

I lived down the road from an occupational therapy school for Downs syndrome people when I was a kid. They were really cool. Funny and geniune and there was one guy who could dance just like Michael Jackson (Ok, this was the 80s!!)
They're just a little more special than "ordinary" folk, is all. My sister was born with a neurological disease that rendered her physically helpless (couldn't walk or talk) but she was a ray of sunshine in our lives. Special needs children can sometimes help you realise that all the superficial bullshit of "Keeping up with the Jones" is not necessary for a happy life.

Sorry if I preached - I'm just passionate about the subject

[Kiwi]

She might want to think about an amniocentisis to get a more acurate reading

if you mean the test where they put a needle in her stomach and draw out fluid then yes she has already had that test

her specialist said she was an extremely high risk pregnancy and would have a one in six shot at having a downs baby

I think shes in shock more than anything else, she is a wonderful person, I know she will love the baby no matter what but shes grieving for the prefect child every first time mother wants.

[wagegoth]

It happens. My husband had an older half-sister with Downs who died when she was only 13. He was eight. Even as a child, he always felt there was something special about her. Animals could sense it and flocked around her.

There is an estimate that between 80% and 90% of fetuses with Downs are aborted. It's obviously become the most common response.

Amniocentesis (which I had to have both pregnancies as I was 37 and 40 when my children were born) can tell you that the baby will have Downs, but I don't know if it can predict the severity.

I'm very sorry for your friend, Kiwi. She has one of the hardest choices to make. I think the best thing you can do is be her shoulder to cry on.

[Buglady]

Lol I got the Country dance and song society for that second link... but Im sure google could find the right one.... wierd.

Sorry, my bad! It was dot CA, not dot org. Fixed now!

[Kiwi]

There is an estimate that between 80% and 90% of fetuses with Downs are aborted. It's obviously become the most common response.

She is already over half way through her pregnancy so I don't even know if that is an option (she wouldn't consider it anyway).