Some upsetting news today..anyone else had this happen?

[hillarylmt]

I had the sequential screening done when I was 13 weeks, ultrasound and a blood test, followed by another blood test at 16 weeks.
The ultrasound looked fantastic, no cause for concern. I thought all the bloodwork had come back the same.
My OB called today to tell me I had tested positive for Down's Syndrome. She went on to clarify that a positive test means that normally at my age, my risk is 1/200. Anything higher then that is called a positive test, and mine was 1/150. So she said it doesn't mean the baby has Down's, just that I am at a higher risk.
I am just in shock right now. Our 13 year old had a brain tumor removed last September (non cancerous) It is growing again, and surgery is not an option, so he started chemotherapy last week. Had a Portacath put in his chest, and goes once a week for 60 weeks. It has just been stressful to say the least, and the one thing that kept making me feel better was knowing that the baby was healthy! I had been such a nervous wreck the first 12 weeks, and now I feel like I am right back in that place!! Its not that we wouldn't be happy and love this baby no matter what, its just that I am scared and in shock, and I wasn't before!!
Has this happened to anyone else??

 

[Soon2bemum]

Hi, don't really have any advise just didn't want to read & run. I'm sure many ladies on here will have been through a similar experience & maybe able to offer some words of comfort. Im Just sending hugs xx

 

[Alita]

A friend of mine ,she is 42 tested positive as well ,but she was told had a 1/5 chance ,she was completely devastated but she had an amino and baby turned out fine ..

Just remember they are only statistics and depending on your age this numbers will increase significantly but still your chances of down are quite low with those numbers .

I am sorry about your little boy i can understand how this news must feel but please keep faith.. this doesn't mean your baby will have downs yet.

Will u go for the amnio ?

Hugs to you

 

[vermeil]

The risk for my age is 1:80. My screening came back as 1:70. The geneticist says that just means the bloodwork wasn`t very conclusive. I did the 20 week detailed scan and everything measures on track, no markers for downs. The geneticist said that reduced the odds by a factor of 2 to 5. Pretty vague numbers... but still that drops the risk at 1:140 minmum.

They suggested I do the harmony test as I refused amnio. This is a much wanted ivf baby and I'm not taking any risks! This new test is 99% accurate (it`s a diagnostic, not a prediction like screenings are). But it's 1000$ and my ""/"$"%$""@ expensive work insurance won`t cover it. I decided I could live with less than a percent of risk and let it go.

As a side note... I had a long talk with my doctor on these new DNA bloodwork tests. THey`re far less invasive than an amnio, as accurate and cost the clinic about... 50$ to do. So why are insurance companies refusing to cover it? They will eventually, as the test will replace the amnio as the test of choice in the public system. Right now they have cold feet, as the test can be done as early as 10 weeks and reveals gender. Many people in the states are against that for religious reasons soooo they remain stupidly expensive (that`s 950$ of profit!!) and not covered for now.

1:150 means less than a percent of risk!

 

[Mahas]

I know it must be damn stressful for you hillarylmt... Prayers your way

 

[wannabubba#4]

I was not told my actual numbers -will ask at my next appointment; but my letter said I was low risk because my number was 150+ (they class less than 1:150 as high and anything else is low risk) Going by that reckoning, you would be low risk if you lived where I do.

I was classed high risk at age 24 with my second child with odds of 1:30 (or thereabouts) and baby was fine

Good luck xxx

 

[hillarylmt]

Thank you all so much, and thank you for sharing personal stories. I am feeling much better about it all today. My husband really put it in to perspective for me. He said, we knew going in to this that we were at higher risk due to age alone, and we wanted a baby and we were willing to take the risk. Whatever God decides to bless us with will be perfect, no matter what. He is so right! That along with doing a ton of research and reading and hearing other stories, plus the fact that in the UK, 1/150 is considered low risk, where in the US it is 1/200, all of the helped! So thank you ladies!!
I think if it were not for what we are already going through with Brandon, this would not have hit me like it did! Its just my emotions are already all over the place with pregnancy and his illness, and finding out that he may never have a "normal" life as they have confirmed they will never be able to remove the whole tumor (part of it is wrapped around his brain stem) so chemo may be a part of his life for the rest of his life. It has just been a lot to take in!!
Thank you all for listening. My doc was able to move my ultrasound up so I have less time to worry, so instead of the 23rd I now go in next Wednesday, the 18th. That was so nice of her!

 

[elociN]

My risk with my youngest (born 2 days ago) came back 1/104 based on blood tests, US was also fine. I refused any invasive testing (amnio etc) and he was born perfect. So maybe don;t stress just yet. I know there is a new HARMONY blood test that can tell you pretty accurately, but it is quite expensive.
PS hope your son is better soon! x

 

[44npregnant]

I had the sequential screening done when I was 13 weeks, ultrasound and a blood test, followed by another blood test at 16 weeks.
The ultrasound looked fantastic, no cause for concern. I thought all the bloodwork had come back the same.
My OB called today to tell me I had tested positive for Down's Syndrome. She went on to clarify that a positive test means that normally at my age, my risk is 1/200. Anything higher then that is called a positive test, and mine was 1/150. So she said it doesn't mean the baby has Down's, just that I am at a higher risk.
I am just in shock right now. Our 13 year old had a brain tumor removed last September (non cancerous) It is growing again, and surgery is not an option, so he started chemotherapy last week. Had a Portacath put in his chest, and goes once a week for 60 weeks. It has just been stressful to say the least, and the one thing that kept making me feel better was knowing that the baby was healthy! I had been such a nervous wreck the first 12 weeks, and now I feel like I am right back in that place!! Its not that we wouldn't be happy and love this baby no matter what, its just that I am scared and in shock, and I wasn't before!!
Has this happened to anyone else??

I just had blood drawn yesterday for my test so it's going to be a long wait until I get the results The Doctor and the nurses make it seem routine and nothing to worry about but being 44, I worry about it a lot!

 

[MonyMony]

How stressful! I'm so sorry to hear about your son. My son is about the same age, so I feel for you. Best of luck to your family.

I had an elevated risk of Downs with my daughter and I was only 31 at the time. I had an amnio scheduled for peace of mind, but started bleeding that day (all turned out fine) so never had it done. But she was born healthy and I wish I'd never worried so much over such a small chance, less than 1%.

 

[Havmercy]

I tested 1:16 chance of downs with my first son at 38 years old. This was a test called a nuchal scan with bloodwork. It was done at 12 weeks and had my nerves torn up for several weeks because we had to wait until I was 16 weeks to schedule an amnio. Then after the amnio, we had to wait an additional 2 weeks for test results. Our tests came back fine, and the amnio was painless. The amnio in itself was scary because it increases your chance of miscarriage. I went home directly after and lay down the rest of the day. We are pregnant again with our 2nd child. I'm 40 years old. This time we are refusing any nonconclusive tests and going straight for the amnio. we get anxious to find out if everything is alright with the baby, but it's not worth the agony these newer test bring when they aren't accurate.

 

[Minnie Mummy]

I'm so sorry to hear what you are going through at the moment. Sending you
In a previous pregnancy my risk was 1:150 I think. I ended up having an amnio and everything turned out fine so it does not mean that your baby is not healthy.
Wishing you best wishes for the future.

PS For this pregnancy I have a lower risk than what I had when i was 30.

 

[shiseru]

I am sorry to hear about it. I prayed all goes well for you.

With the risks of CVS and amniocentesis making pregnant women wary, there is a new test called the Harmony prenatal test. It's a safe, highly accurate, and affordable non-invasive DNA test that detects common fetal trisomies as early as 10 weeks with a simple blood draw.

I took the Harmony BT when I was 11 weeks pregnant, and received my results after 10 days. I am 39.

Those who tested positive during the NT scan, or even before taking up the NT scan may want to ask your doctor about this.

You can google for more info about the Harmony BT

 

[vermeil]

*cough* I disagree with the affordable part, it was 1000$ for me so I decided not to go ahead with it. Especially when the geneticist explained to me the test is simple bloodwork and costs the company 50$ to do... It WILL replace amnios soon as it`s much safer (zero risk) AND costs much less than an amnio to the health system.

But I agree that 1000$ is a small price for peace of mind. If my risk had been higher (it was 1:140) I would have definitely gone forward with it.

 

[onceisenough1]

Can you do amnio or Materni21? THis is one of my big fears being an older mom.

 

[shiseru]

vermeil, I had the Harmony test in Singapore, it's not cheap either I paid SGD1800 (USD1400) but i read it's pretty affordable in some countries. Yes I fully agreed with you, it's a small price to pay for peace of mind and you get to know the gender of your baby as well

onceisenough1, you can consider the Materni21, i believed this is similar to the Harmony BT, if the results is clear, your doctor would usually not recommend an amnio.

 

[CaliDreaming]

OP

I went through the same thing with dd in 2010 when I was 35. I had a 1/53 chance of Down Syndrome and her nuchal fold was on the high end. They did detailed ultrasounds and everything looked normal, but of course they can't rule anything 100% with those. So I spent the next six months worrying, stressing and googling because I was too nervous to do an amnio.

I didn't realize the Harmony test was so expensive. I'd probably cough up the cash to do it though, because I don't want to go through what I went through last pregnancy. Dd ended up not having DS but the whole experience was traumatic.

 

[2have4kids]

My gf had the same statistical number at 42 so she paid for the non-invasive test and was perfectly fine. You will be fine too.
Hang in there, one day at a time. You'll be ok, be calm for your LO. I hope everything works out for the best with the chemo. Does he need radiation too?

 

[BabyMaker73]

I just had blood drawn yesterday for my test so it's going to be a long wait until I get the results The Doctor and the nurses make it seem routine and nothing to worry about but being 44, I worry about it a lot![/QUOTE]



This is stuff I worry about too...I'm 40 and we are trying fervently for number 1. Is this your first at 44?? All the best to ya and the wee one!

 

[FeistyMom]

The Harmony test was offered for me as well, but the company that has patented the test was offering significant discounts if insurance denied coverage, making it around $50.

With the year changing over, some insurance plans may be covering it already, especially for moms diagnosed with 'advanced maternal age', which automatically qualified me for coverage for more testing and additional ultrasounds.

My thoughts and prayers are with you and your older son though - brain tumors are such a scary thing to deal with. I have hopes that they will refine the gamma knife technology more and more each year so that fewer people have to go through the devastation of chemotherapy. Best wishes for you and your whole family!