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High risk for downs

(80 Posts)
Jinxysbaby Sat 21-May-16 19:55:57

Hi ladies I'm here cause I dnt have no one to talk to had my 13 weeks scan on the 17th may, iv been told I'm 1/91 for having a downs baby, the babys NT was 2.8mm, blood test hcg 1.1 mom nd papp a 0.5 mom. I'm only 33 years old I'm in shock, I decided to have the cvs test which I did on the 19th, now the long wait for results iv never felt so helpless in my life I can't sleep or eat nd today all the worry took over me nd had a panic attack, dnt no how I'm gonna cope with bad news sad

SnookieSnooks Sat 21-May-16 20:04:10

Really sorry....'but just to say that you have a 90/91 chance of having a baby who doesn't have Down's. A gambler would regard these odds as a certainty. Try to get some rest and put it out of your mind.

Jinxysbaby Sat 21-May-16 20:06:15

Ty snooker I do try

Expatmomma Sat 21-May-16 20:07:05

I had a 1 in 80 chance. I decided not to have further testing. I had been a part time nanny to a toddler with downs syndrome so knew I could cope. That was a deeply personal choice.,

DS is now 12 and does not have downs.

Please don't panic.

Expatmomma Sat 21-May-16 20:07:42

Ps I was 33 too.

Jinxysbaby Sat 21-May-16 20:09:35

Ty so nice to hear that x

amysmummy12345 Sat 21-May-16 20:11:14

I had a 1/5 chance, CVs came back clear, have faith lovely xxx

millionsofpeaches Sat 21-May-16 20:13:02

My cousin was give 1:67 chance and her son does not have Downs or anything else. I was given a 1:9 chance and sadly my baby had Edwards syndrome, which was actually very obvious on the scan.

I know you're worried, but 1:91 is actually not that high. Hang in there for the initial chromosome results from the cvs, they don't take long (easy to say when I'm not the one waiting).

Toocold Sat 21-May-16 20:13:04

My dd had a 1 in 3 chance, she doesn't have downs. Snookie has it, gamblers odds and all will be fine, try to not think about it, hard I know. Take care.

Monroe Sat 21-May-16 20:14:20

My niece was also told she was 1/5 chance with her ds. She was 21 at the time. She also had the test and had to wait. She got the results on Christmas Eve, all clear

Jinxysbaby Sat 21-May-16 20:15:52

Ty all its nice that some do get good results, I don't really no wat Edwards is but did u keep the baby

Jinxysbaby Sat 21-May-16 20:17:24

They are saying something about heart problems even tho at the moment baby's heart looks fine, it's just alot to take in

PinkParsnips Sat 21-May-16 20:19:45

I recently had a 1:20 risk for Downs and it came back clear. The overwhelming odds are that your baby will be fine but the wait is horrendous I know flowers

Look at it another way, you have a 98.91% chance (if I have worked that out right!) that everything is OK.

PinkParsnips Sat 21-May-16 20:21:25

In our hospital they only consider a NT over 3.5mm to require extra testing for heart problems so you are well under that.

umizoomi Sat 21-May-16 20:23:26

I have been there with a 1/25 chance - all fine.

It's tough but think of this - 1/91 is only 1.09%. That's 98.9% chance all is fine.

If I told you that there was a 99% chance it would rain at 2 pm - you would believe it would definitely rain at 2pm!!

I know it's hard and there isn't a guarantee but the odds are heavily stacked in your favour

KittyandTeal Sat 21-May-16 20:24:28

Sorry you're in this situation. The waiting is really tough.

Our dd2 had Edwards. It is trisomy 18 so 3 chromosomes on 18 rather than 21 (which is Down's syndrome) it has a lethal diagnosis and is extremely life limiting. Prognosis is usually bad with babies dying in utero or within the first few hours, days, weeks or months.

Heart problems are fairly common in babies with trisomies which is probably what they are talking about. If your baby does have T21 and you decide to continue with the pregnancy they will want to do more detailed heart scans.

The wait for results in really, really tough. Have you and your dp discussed what your decision might be if the cvs comes back positive?

Jinxysbaby Sat 21-May-16 20:26:34

Tbh I'm trying not to think about it right now if would probably depend how sick the baby would be

KittyandTeal Sat 21-May-16 20:29:30

I understand that.

There are some wonderful posters on here who have babies and children with Down's syndrome. There are also posters who have had terminations for medical reasons (me included).

We are here for you, whatever the result and whatever you decide.

Jinxysbaby Sat 21-May-16 20:35:18

Thank you I'm so happy to have seen this group as I was on Google readying others story's, I'm gonna keep u updated

eddiethehorse Sat 21-May-16 20:41:10

With my first, she was 1/20, I thought the test had to be wrong. My dr pushed for a amnio, I knew the test had to be wrong, had another test and my baby was 1/2000. This time round I had a Harmony test. Re test x

PinkParsnips Sat 21-May-16 20:43:55

Yes please do let us know and good luck flowers

wintersdawn Sat 21-May-16 20:44:59

I was 33 with my first and told over the phone that basically my odds of downs were so high I needed to make the decision as if the cvs had already come back. Went for a cvs that day and all came back clear.

I will say though that the rest of my pregnancy they kept panicking me. We were also told she would be midget. Would have growth issues etc. Had monthly scans and tests on so many things. It was like because I'd had an issue at the beginning they kept looking for things.

I now have a 5 year old daughter who is as normal and contrary as any other with no medical conditions.

Jinxysbaby Sat 21-May-16 20:46:08

I was thinking it had to be wrong but I see the fluid on bubas neck, my heart sunk

Jinxysbaby Sat 21-May-16 21:10:29

Winter I no the feeling with All these growth scans my 3rd child was always showing up small they was telling me she was gonna be a little person 8mth of hell for me, I no the papp.a test if low means small baby well my baby Was small 5lb but no other problems these doctors do make u worry

Nightfall1983 Sat 21-May-16 21:13:32

Just briefly to pop on and say I had a 1 in 3 risk of Down's syndrome, declined the cvs but went on to have the harmony test which confirmed that my daughter has Down's syndrome. Having all that time to prepare for her was a wonderful gift, she has a serious heart condition (around 50% of children with DS have heart defects) but like many (most?) heart conditions it is curable with surgery. She is currently 5 months old, a delightful and very 'normal' baby who is the apple of everyone's eye. We expect her heart surgery to take place in the next 3 months which is fucking terrifying but day-to-day doesn't affect our lives or hers. Best wishes for the rest of your pregnancy

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