AMNIO....
Well, the recap - with added comentary:
My first trimester screening results were:
NT= 2.0 mm
PAPP-A = 1.31 MoM (multiples of mean - this means I have 1.3 times the average amount of PAPP-A or 133%)
HgC = 1.61 MoM
maternal age of 28, overweight and caucasian gives me a first trimester screening result of 1:1400 for a child with Down Syndrome.
Relief kicked in. Would I terminate a DS pregnancy - pretty sure the answer is yes. I know this may seem awful, but the hubby and I do not have what it takes to raise a child with severe disability. We are not very financially stable. We would need one of us to be a full time caregiver. We would have a life of worry about how our child would live without us. If money was more stable and we could get all the help we needed - I guess then we would have a different outlook on things.
Now fast forward to the second trimester:
Sprout has an EIF (echogenic intracardiac focus) on ultrasound. This is a soft marker for Downs - meaning it is seen more commonly in babies with DS than "normal" babies. I think the percentages were something along the lines of 10-20 % of Down Syndrome babies have EIF and 5-8% of "normal " babies have one. I read up on a lot of opinions on EIFs. Some doctors feel they are VERY wea soft markers and DO NOT recommend amnio at all for the isolated finding of an EIF. Astrailia doesn't even consder EIFs soft amrkers anymore.
Anyway, I went and met with a genetic counsellor (and grilled my best friend since she is one!) - and this is what I came away with.
My odds of down syndrome are now 1:700. Some studies I read would actually increase me to closer to 1:466. Both genetic counsellors said they do not agree with this. So my result is 1:700.
Normally children with Down Syndrome have high levels of HgC (which mine are approaching high but not quite there) and low levels of PAPP-A (which mine are high!).
Bottom line for me was the risk for the amnio is 1:400 to miscarry. This risk is almost twice as high as Sprout having Down Syndrome. Vincent had an EIF - and he was chromosomally normal. A 1:400 chance of miscarry - just because I needed to know , it's worth it to me.
Especially facing the other odds. Now don't quote me on these numbers specifically! From what I have been told and researched :
I have a 60% chance of PE re-occurance
I have a 20% chance it will strike early like with Vincent and I will have another loss, I have a 20% chance I will hold off a while longer and then Sprouts chance of disability gets slightly lower every week. 20% chance it comes out toward the end and I get a take home healthy baby.
Let me tell you - the odds of PE striking again are a hell of alot more scary than a child with Down Syndrome. The odds my baby won't make it home are greater than my risk for DS. The odds my baby would have a severe disability is scarier than DS to me.
Either way, the hubby and I have made some choices. No to the amnio. If our son has down syndrome - we will do the best we can to give him a good life. If my son doesn't survive this pregnancy - at least we gave it our all. If my son has a severe disability due to prematurity - we will love him all the same and try to make life as good as we can for him.
With all the odds we are facing - 1:700 doesn't sound too scary. 1:400 for something we place upon ourselves does. We wouldn't be able to get over losing our son due to an amnio. At least not with the risks as they currently stand.
It's a very personal decision, on what to do. Some kids with Down Syndrome are pretty high functioning(live independently) In comparison I've seen some kids with autism or other disabilities struggle more. And I do wonder if I would be able to handle such a thing. But I think as a parent you would somehow rise up to the challenge.
ReplyDeleteHey are you on facebook? I just started a page, and put up a couple of pictures of my doxies. I can send you a friend request?
take care, and I hope you are on your ass(ha-ha) for a long long time.
Barbara
Yes - I just added a facebook badge so you can click on it to find me :) love to see daschunds!
ReplyDeleteJamie,
ReplyDeleteSorry that the bedrest is official, but looking forward to following your pregnancy. I think with each week that passes, you can breathe a sigh of relief, although having gone through the experience of losing Vincent and having PE, I am sure you won't "relax" till Sprout arrives full term. I've got my fingers and toes crossed for you to be on the right side of the odds (=
Jamie, I just sent you a friend request.
ReplyDeleteMy page is under Lynne Ringwalt. I go by both Barbara and Lynne though.
Barbara