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Amnio Results - Not good

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Amnio Results - Not good

Postby BabiesGalore » Tue Jan 06, 2009 6:23 pm

Hi. We just got our amnio FSH results back yesterday and found out that our baby has down syndrome. We are so devastated. I can't seem to stop crying and make this pain go away. We are still trying to decide what to do. This is one of the hardest if not the hardest moment in my life. Sometimes i feel life is just not fair. We have all been thru so much and then to have it all taken away just like that. We have a consult with a counselor on friday but we need to make a decision fast. I was wondering whether anyone has a similar story to share or offer me hope that things will get easier. My heart is broken right now and i just can't seem to know how to fix it.

:cry:
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Postby Sara30 » Tue Jan 06, 2009 6:26 pm

Hi

I am so sorry for your news, words cannot say how you must be feeling. I guess this is a decision only you and your DH can make as to what to do once you have discussed it with the councellor. All I can say are my thoughts are with you.

Lee x
Finally I am a mummy, we are about to adopt our beautiful little girl xxxxx
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Postby CT_Michele » Tue Jan 06, 2009 7:07 pm

Babiesgalore- I am so sorry to hear your news. As Sara said, we know this will be a truly difficult decision for you and dh, and only one that you and him can make. I do urge you to reach out, talk to the counselors, talk to other women here.

I suggest maybe posting in the parents after treatment with a new thread. I bet there are some women who have experienced this and can provide some wisdom. I also do not know much about the test and about how accurate it is, but i know that many women on these boards have had some false diagnosis's from preliminary testing.

Down syndrome today is viewed much differently than it use to be. i am a teacher and I see many children with down syndrome who live normal long happy lives. Just know that whatever decision dh and you make, all of the women on these boards are here to support you. You are in my thoughts and prayers.
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Postby kholtan » Tue Jan 06, 2009 8:43 pm

Your thread just breaks my heart. I am soooo sorry for the pain you are going through. I agree with the other women totally. I have heard of many false positives as well.
My thoughts and prayers are with you during this challenging time. No matter what you decide you and your dh will know what is right for the both of you. Talking about it will help sort things out for sure.
HUGS!
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Postby children » Tue Jan 06, 2009 8:59 pm

Hi BabiesGalore,

I am very sorry what your and your DH have to go through.

Here I am attaching two websites that I sometimes visit to prepare myself (all my pgs resulted in 1/32 risk of DS with my own 43 year old eggs, we did not do any tests to know whether our babies have DS, but our first DD is normal), hope they help you and your DH make this truly difficult and personal decision. I sincerely believe any decision is right decision for your family.

Take care!

http://kidshealth.org/parent/medical/ge ... drome.html

http://www.ndss.org/
Me, 50 DH, 40
IVF, 11/05, 19 embryos(e), no ET, OHSS
FET, 02/06, cancelled, dominant egg
FET, 04/06, 4e, BFN
FET, 06/06, 6e, DD born 02/07
FET, 05/08, 5e, DS born 01/09
http://yasminachina.blogspot.com/
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Postby Annie973 » Wed Jan 07, 2009 5:45 pm

Babiesgalore - I'm sorry to hear about your baby. Is there a way you can do a second test. Friends of ours had said that the doctors thought their baby had down syndrome based on the initial testing. They did further tests and the baby ended up not have down syndrome. Is there any way they could be wrong??? I would def. go to a different doctor to get a second opinion.
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Postby babyhope1 » Wed Jan 07, 2009 6:01 pm

I have heard of false positives, get a second opinion. All my best.
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Postby Warren Dew » Wed Jan 07, 2009 6:35 pm

Annie973 wrote:Friends of ours had said that the doctors thought their baby had down syndrome based on the initial testing. They did further tests and the baby ended up not have down syndrome.


If it's an amnio, it's probably already the second test. Normally they do a screening test, such as and ultrasound nuchal translucency test, and those do have a high rate of false positives. If you get a positive on the screening test, you get the amniocentesis, which is pretty accurate.

My sister in law got a positive on the ultrasound, but a negative on the amnio, which may be the situation you're talking about. (And the baby did not have Down's.)

They could have a second amnio just in case, but I wouldn't get my hopes up.

BabiesGalore, I'm really sorry to hear your story, and you are right, life is really unfair sometimes. You have a tough decisions, but at least you know now that IVF can work for you.
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Postby kerpupples » Wed Jan 07, 2009 8:06 pm

As Warren said, I think the false positives occur on screenings, not actual DNA tests such as an amnio or a CVS.

I'm so sorry sweetie. This was a big fear for DH and I. We actually didn't talk about what we'd do if we had a positive. Personally, after all I've gone through and what I've heard about Down's children, I think I'd still probably want to have the baby. But it's a very, very personal decision.

Best of luck in whatever you and DH decide.
Amy
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Postby BabiesGalore » Wed Jan 07, 2009 8:24 pm

Thanks everyone for your kind words and thoughts. Since this was the secondary test - amnio, all the doctors said it is 99.7% accurate. I also keep hoping that they could be wrong but have yet to hear of one based on all the reading i have been doing. We are seeing a counselor on friday to talk. this is so hard and not sure if there is a right decision here..either way it will be tough.
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Postby Fluffypuppygal » Fri Jan 09, 2009 5:49 am

While we don't have Down's in my family, both of my brothers have disabled children (One has severe autism and the other was diagnosed with severe ADD, like in the movie "The Other Sister").
While it has been hard, it has neither been the end of their worlds or the end of their happiness.
For their children, starting out in life was hard. There were health issues they had to address and both my brothers had to get really serious really fast about jobs with good healthcare coverage. But the good news is the kids did eventually grow out of this stage and were able to attend school, even though they did have to attend special education.
There were still Christmases full of fun, friends, school pagents, kisses, and birthdays. Kids will still be kids, even with disabilities. They play, they laugh, they love, and they have good and bad days.
My nephew is now 21. He has a job, but still has to live at home. He has a girlfriend and a son, who as far as we can tell is healthy and being raised between grandparents.
My niece is a harder story. She is now 18 and still has health and development issues, but my brother thinks the world of her.

Like the other posts, I can't tell you what is the right or wrong choice to make, but I do want to reassure you that no matter what choice you and your husband make, there will be happy times ahead.
I hope this helps a little!
Me - 37, DH - 46
1 m/c at 26, 1 ectopic at 27
BFP with 1st IVF! 1st beta 60.85, 2nd beta 975!! Its a boy!
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Postby Literatriz » Fri Jan 09, 2009 3:42 pm

Dear Babies galore,
My heart goes to you and the father of your child. Many posts gave you important information. I'd just say: learn as much as you can, as fast as you can, about Down Syndrome - from specialists that are not pushing for an abortion or for having your child. You may want to visit your local Special Education Department and talk to a Special Educator liaison. Without violating any child's privacy, this person can tell you about early intervention services, school programs and - more importantly- about how varied is the outcome of DS children. Some may achieve functional levels that surprise us but some live with considerable limitations, demanding the family support for as long as they live.
Talk also with DH about your religious convictions...about how knitted your family is (most successful DS children have extended families living around so parents don't get burned out)...how financially secure your are... and how generous is your state when it comes to special education programs (there is a great degree of diversity throghout the states). If you and DH disagree, you may want to go to intensive therapy to talk this issue over with the help of a professional.
Any way you both decide is painful and difficult. Hope you don't feel alone - seek support groups, email friends, etc...I will be thinking of you and your suffering.
In solidarity, Literatriz
me 50, dh 54
2 BFN after IVF in Brazil
1 BFP after IVF in Brazil (Clinic Origen, thanks!)

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Postby riogirl71 » Fri Jan 09, 2009 5:07 pm

I am praying for you and whichever way you decide to go, don't let people judge you. People can be mean and opinionated, in the end it is your decision and DHs and don't let other people hurt your feelings no matter which way you go. I am really sorry you have to go through this.
me 39 + DH 46 low mot - chemo
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Postby bdantonio » Fri Jan 09, 2009 5:32 pm

Well everyone may hate me for my oppinon but i will live with it. My born was suppose to have downs. I had 3 miscarriages prior to her. When i was 10 weeks my 1st trimester screening said downs, my triple screen said downs, my amnio said downs.... shes normal... nothing wrong... They tried to get me to abort fer from 10weeks on.. I said that there was no way. I persoannly looked at it as i went thru hell to get pregate all 4 times through fertility and lost the first three is i was ment to have a downs child so be it. Now i have a perfect 4 yr old who is ahead of most kids her age. She can write her name address phone number and read alot of 4 letter words and knows sign language and spanish. My last child who will be 1 next month i refused all screenings and all test i dont trust nor believe them. I did my research and most kids with downs live pretty normal lives these days. Just think hard thats all i can say. I didnt want the amnio with the 1st cause i didnt care but had it anyways and it was 99.7% sure and shes fine. I also know that i was 18 weeks durin amnio i had felt her move n was in love i could never aborted her. i also was told that i had less then 1% chance of ever getting pregnate naturall i have 2x inbetween my daughters lost them both but i did concieve so nothing is 100%.
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Postby kholtan » Fri Jan 09, 2009 5:42 pm

bdantonio~ I love to hear stories with a happy ending! I admire your strength for not aborting and knowing things were fine. I'm afraid I don't know if I could have done it. Thank goodness I didn't have to decide.

Babiesgalore~ How are you? Don't feel like you have to post your decision on here or anything. You have often been on my mind and I hope you and dh are doing alright.
Me 35, DH 35
Ectopic Oct. 2005
IVF transfer 1-21-07. . .TWINS!!!!
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