I got a call last night.
It was from my brother. His wife is pregnant as I have announced on the board. They have been trying for 6 yrs! So we were all so thrilled.
She is now in her 4th month and they took a blood test from her. It came back positive for Down's syndrome. It took me a long time to get out of my brother what sort of test it was. He is VERY distraught!
I looked it up online and it seems that is far from an effective test. It seems that they can only get an idea that she may be more prone but the test that IS effective is dangerous.
It is an anmiosentisis *sp?* and causes a miscarriage in 1 in 100 births.
Chris and I have vowed to be there through any decisions they make.
I was just wondering if anyone here are went through this...and perhaps if anyone has more expertise on this then me.
Totally off topic but I need my friends advice
Lorry, I have not been through this. But I will keep your family in my prayers. : ) Pam
Thank you Pam..I really appreciate it.
lorry...i have no experience at all either....i can ck with some doctor friends of mine at the gym...and of course..i will be keeping all of you in my prayers as well...bless you and yours...Bob
Oh, no. I'll be praying hard for them.
If she took an "alpha fetal protein test," the results of that test are far from conclusive. In fact, that test produces so many false positives that many OBs have quit using it. My brother-in-law & sister-in-law went through this same trauma, and they did opt for an amnio, which showed everything was fine. So what the blood test means is that there is a chance of Down's Syndrome, but "a chance" is not a definite diagnosis. They need more information, and hopefully their doctor will provide it.
Whether or not to have amniocetisis can be a hard call. I don't think the risk of losing the pregnancy is as great as 1 in 100 anymore, however, there's still a risk. I think it comes down to what you would do with the information. If you need to know for certain asap because you would choose to terminate a pregnancy rather than have a child with Down's Syndrome, then amnio may be an acceptable risk. If you just want to "know" before the baby is born, then there are other diagnostic tests that can be done along the way. Sonogram technology has gotten so good that they can make very precise measurements and compare them to some physical parameters thay may indicate Down's Syndrome (although again, we're not talking about a 100% definite diagnosis).
They may also want to become better informed about Down's Syndrome. The extent of the physical and mental effects of this syndrome vary widely. This isn't the sort of disorder that can make your child's life short & painful... kids with Down's Syndrome can & do grow into happy, well adjusted adults. Of course everyone wants their child to be perfect, simply because you want the best of everything for your child, but people draw the line at very different places when it comes to deciding to terminate a pregnancy, and sometimes you just can't say what you would do until you are actually there. So please don't think I'm passing judgement or even saying what I would do.
I wonder if they have checked out resolve.org (http://www.resolve.org/site/PageServer), since they've been "trying" for so long... It's an excellent resource and has some good online support group stuff going on also.
I'm so sorry they and your family have had their joy in the pregnancy tempered by such heart-wrenching confusion.
((((( Lorry & Chris )))))
I don't know anything about it really Lorry but your all in my prayers.
But to be honest with you I personaly would not ever have a test as I would love me Child Down's Syndrome or healthy. Down's Syndrome childred have a great chance to live full lives and are very smart grow up and work , live on their own even get married.
There's been a lot of TV shows on it.
Also all of us have disabilities and known of us are perfect .
I also am not judging anyone just saying how I feel /
I'm sorry for your family to good news mixed with bad. But the bad can turn into good :))
I'm praying for you all .
Allison, we've been trying for years to have a baby, and I can't imagine that we would ever choose to terminate a pregnancy, but as I said... that's the kind of decision you can't really ever make for sure until you are faced with it, and hopefully it's a choice we'll never have to make. One of the reasons we were very conservative in choosing how many embryos to transfer when we did IVF is that we didn't want to be up against the decision of whether to continue a pregnancy with quints, for example, or to do what the clinics euphamistically call "reducing the pregnancy." You hear about the couples who miraculously end up with 4 healthy babies; you don't hear much about those who end up with none, so it's not the easy decision it may look like when you think, oh, of course we would want 4 babies!
Whatever their next step, Lorry's brother & his wife must be so worried and scared right now... I'm praying God will grant them peace and grace during this difficult time, and I'm praying that those test results are a "false positive!"
Thanks everyone for your wonderful support..It really does help.
I have vowed to stand behind my brother and his wife with whatever decisions they make...and I agree...you never really know until you go through it.
I have also been trying for a baby for a long time (though we have not tried fertility) So I understand your heartache with that also critter...it really can be frustrating.
Thanks again everyone :) Your prayers and well wishes are truly heartwarming.
I understand that Jill. I also like you said I was not judging BUT praying for the either way. I won't go into a long story but I had my two sons young and always wanted a girl but was told I could not get pregant and if I did I would never carry full term. When I did nine years later with my Baby Amber Joy..
Everyone and everything pointed toward an abortion.
People were pushey to about it. I am so happy I stood stong as she is now married ( Three years last Nov) and the most wonderful person I know. )
So I won't tell anymore of the horrid story.
Lorry and Chris once again I am never judging anyone and praying for you all :))
Prayers are going out to you and your family Lorry. Regardless of their decision, I pray that they find peace. I'm sure this is a time filled with mixed emotions for all of your family. God Bless!
ed. for spelling
This message was edited Feb 2, 2006 9:14 AM
My thoughts are with you Lorry and your family - I do agree with Jill's response - if they need to know the results because of a decision to make on the continuation of the pregnancy -then I would probably take the chance with the test. If the results didn't matter then I would worry about the testing post partum - which are usually non-invasive.
My best friend's daughter went through the same thing, and went ahead with the amnio test and found out the first test was a false positive. I am so sorry they are going through this.
I had a friend who was told by her doctor that the baby and Down's, a cleff palate and a hole in her heart. They decided that regardless, of any problems, it was their baby and they were keeping it. She had to be on an IV pump and bedrest the last few months due to premature contractions. They took her off the pump near her due date and she carried 2 weeks longer.
She produced a perfectly healthy happy baby girl. No downs, no cleff palate and no hole in the heart. Unless they are willing to abort, just accept the worst and be prepared to deal with it. If all turns out OK, so much the better.
I agree with most of the feelings here. I am one that believes in preparing for the worst and praying for the best.
I am often hearing of the false positives...so they are going for a second..non invasive test. It is a stage 2 ultra sound and then taking it from there.
It's amazing how much they can tell from ultrasounds now. Hopefully they will get a reassuring assessment! I'll keep praying. :-)
I'd like to add my appreciation for this group & for the posting guidelines at DG... I know of few websites where a thread like this wouldn't degenerate into a flame war about legality & morality of abortion. I really appreciate Dave's policy of not allowing political or religious debate, not that I think any of our "regulars" here would be anything other than positive & supportive of Lorry & her family. HUGS to all of you!
Oh is this post somehow against the rules? If it is I am SORRY.
don't think anythings againist the rules when it involves friends?
Yes Lorry we are here for you.
You guys are really the best..in SOOOO many ways :)
No, no.... not against the rules at all!! But I've seen threads like this turn ugly elsewhere, and when I realized how careful we were all being to be unconditionally supportive, it just made me realize how grateful I am to have this warm & caring community. I'm sorry if I sounded critical -- that sure wasn't my intent! And if anybody were to "crash" this thread and try to turn it into a political/moral grandstanding debate, that *would* be against the rules, and admin would step in.... and I appreciate that, too.
Ah..yes..I agree with you on that.
I have been on boards where EVERYTHING turned into a fight.
I just don't get it at all.
I wish people would learn to get along, love and support each other.
Life is just too short to be so angry :)
and you didn't sound critical at all :)
Lorry,
Any idea when the second test will be done? I'll be keeping them in my prayers.
Sharon
Lorry,
Hugs & Prayers to you & your family.
In my lifetime I've been blessed with 2 healthy children, 2 healthy adopted foster daughters and a beautiful healthy grandson just this past Thanksgiving....
My heart really goes out anyone being faced with such a heavey burden.
My prayers are with you all.
MsC
Sharon..it seems the second test is a stage 2 ultra sound..it is done like any other ultrasound but it is a more vivid and 3 dimensional picture...Which should give us an 80% accuracy rate.
They are going for it next Thursday.
MSC thank so much..You guys don't know how much your support means to me :)
I have made some wonderful friends here which I feel blessed to have :)
Lorry I had an amnio w/ my last pregnancy, I was 32 and my doc said that put me in the high risk group due to age- actually I believe I had good insurance.
I know the amnio is a scarry proposition but it's not so bad- the mom has to drink a ton- and I mean a ton- of water so that her bladder is really distended, it's ultrasound assisted so the doc knows exactly where he/she is inserting the needle. It's not the most fun I have ever had, but it wasn't the worse. I do recall feeling pretty crappy for the rest of the day, they send you home w/ instructions to not go back to work that day, lay down keep your feet up, rest, etc.
I know that 1 in 100 may seem like a great risk and you never know if you are that 1, but actually 1 in 100 isn't such a risk- 10 in 1,000 or 100 in 10,000 are just other ways to express 1 in 100.
I haven't had the alpha fetal protein test in 17 years but I do recall that it had a fairly high rate of questionable results- I am not saying it isn't a good test, but I am saying that a positive finding is just an indication that something needs to be looked at, it's not a diagnosis. Also I thought that it was also, or could be indicative of other neural tube problems, not just Downs.
I didn't read through all the posts above and maybe somebody else said all of this and in a better way, if I am repeatting what has already been said you can ignore this. If I have given you any information that helps I am happy to do so.
You and your family will be in my thoughts.