1 in 15 chance of Downs

[JaffaSnaffle]

Hello, I hope someone here can help, I'm in a complete mess.

I am 31, with one DD age 2. Since my retrospectively idyllic pregnancy with her, I have gone on to have 1 miscarriage at 17 wks, (chromosomes normal, no explanation), another miscarriage at 8 wks (low hcg, poor growth on a scan), and now this.

My bloods are bad, high hcg and low PAPP-A, and NT is quite high at 2.5, ) was 2.9 on one reading.

Before I got my NT results, I thought I would automatically keep any baby. Now the reality had hit, I am in a total muddle.

I have had CVS, and I am waiting for the results, which are delayed by the bank holiday.

I am a lapsed Catholic, and have issues with abortion. But I am so worried about the impact of a DS child on my family as a whole, but particularly my DD. I live a long way from my family, and have very little support nearby.

If my child does turn out to have Downs, I am aware that they may have a lovely life, but they may suffer with health problems. And it will be impossible to predict what the outcome will be.

I know if this baby has Downs, and I keep them, I may have to watch all my family struggle. But I also know if I terminate, I will be battling with guilt and sadness all my life.

I am in an agony. I know 1 in 15 is so very high for someone my age and so I cannot help but fear the worst.

Having lost 2 pregnancies already, I never thought I would be considering ending a 3rd, but it is a possibility for me now.

Any words of wisdom would be really appreciated.

I know of someone who was 17 and had a 1 in 4 chance of DS and had a healthy baby. It is high but not definate.

Wait until the results come back and then start thinking again. You won't know what you want to do until you find out what the situation is.

That's no help I know. Sorry

I'm an older sister to a brother with Downs, we have no other siblings, there are 2 years between us. He is an absolute joy and has enriched my life in ways I can't even begin to articulate. I do think about the future a lot because he will be my responsibility if/ when anything happens to my parents, boyfriends HAVE to be good with my brother or they're out the door.. but honestly I wouldn't have it any other way.

I know lots of siblings of disabled people who feel the same.

I think the impact on the parent is far far greater than on the sibling. Your daughter is so young she really wont know any different, she will just love unconditionally like children do.

Best of luck whatever you decide. xx

I am a catholic. (Just so you know).

I am very sorry that you are under this stress. You sound as though you have your head screwed on. You already know that having a child with Downs will not be the end of the world, but you are right to consider the impact on you and your family.

Yes 1 in 15 sounds like a high probability, but another way to look at it is less than 10%. Wait for the results of the tests. Then you can further explore the impact on your family and all possibilities such as what support is available locally and if moving closer to your family would be practical or of any use.

There are agencies that can help you clarify the best option for you and your family such as Marie Stopes and BPAC and there are agencies that will support you after termination, if this is what you decide is best.

God will not judge you* and other people have no right to.

*cos he loves you no matter what.

No words of wisdom unfortunately but just wanted to say you are not alone and I can totally sympathise with the agony you are going through. My tests have come back at 1:5 chance, it's just devastating.

In terms of making a decision I've come to the conclusion only my DH and me can do it. I also think unfortunately what ever decision we (you) make there will be regrets at some point and pain. It's a heart breaking situation.

Sorry probably not much use. Good luck with your results and just remember the odds are in your favour.

Dione - I'm not religious but have been moved by your last couple of sentences.

hi there,

I completely know what you're going through - I was there 6 weeks ago xx My NT scan and massively high HCG levels gave us 1:11 risk. We laready have a 3yo son and have had two early stage miscarriages last year too.

I turned out to be the one in eleven and baby did have Downs, as well as other problems which were found at detailed scan when we had the CVS test. I was a total mess but there was one clear thought I had in mind.

Most people with Downs these days live to be 40+. I might noy be there when that happens.....so who has to take responsibility for that child: their siblings, most likely. I wasn't prepared to potentially impose my decision on my DS's future. To me, he had to come first: he is already here.

Heartbreaking and gutwrenching as it was, we decided to terminate coming up to a month ago. We want a second child so, so badly and we've been trying well over a year now so I know the back and forth your head does over this.

I can't offer any advice other than to go with your own instinct - and do what's best for you & your family. Balls to anyone else and their opinion, whatever you choose; it's nothing to do with them.

Big hugs and lots of love - it's such an awful situation to find yourself in. I still feel that someone removed a month of my life as it just feels so odd and 'distant'.

Do you know about the charity ARC, if you haven't spoken to them they are fabulous. Absolutely centred on you, no judgement and real understanding of all the issues.

I'm sorry you are going through this. We had a 1 in 17 chance, but when I heard it it sounded so high, and I was convinced that we would be the unlucky ones.

However might it help to know that a 1 in 15 chance is less than a 7% chance?

In other words you have more than a 97% chance that everything is OK.

I'm not meaning to minimise the anguish you are going through at al - I remember that week was one of the longest in my life. But looking at the figures that way gave me comfort, I hope it does for you too. The odds are massively in your favour.

My DS tested negative for downs, thankfully. We later found out that there was a notch on one of the arteries in my womb, and I think this contributed to the result which ended up in a higher risk for downs maybe? I forget the details now - but if it's of interest to you I'll look it up (I posted about it at the time).

Sending you massive hugs. It'll most likely be OK xxx

I had a 1:15 chance, with nt of 2.6mm, high hcg and low Papp-a aged 35. I also had a 2 year old to think of. So I know where you're coming from. It's a scary time and I was so sure I would be the 1 but a CVS showed all was fine and my second son has just turned 1 a few weeks ago. I think I would have terminated had the results been different for the sake of my other child (as someone else said, he was already here). It's a very sad time, heartbreaking, I hope for good results for you too. x

I am the oldest sister of three, our youngest sister has Downs. With the utmost respect for whatever decision you make for your family, I truly feel my sister has been an utter joy to grow up with and has truly made us better people for having known her. Things were hard when she was young because of a serious heart defect, which is still affecting her at 28 years old. But I wouldn't trade her for the world.

Hi, i had a cvs. Ds2 had 8mm of fluid, but there were no other markers. My bloods came back normal range. Had (think) 1 in 3 chance of downs. Results came back and he didn't have downs and they couldn't detect any other chromosome abnormalities. Because of the very high nuchal fluid we continued to have scans every two weeks to check his development and still nothing was found, so we relaxed a bit and waited. We were told that everything that could be checked for had been checked but that obviously there could still be a genetic problem. When he was born he was very small 4lbs at 37 weeks but seemed perfectly healthy. He gained weight VERY slowly and was seen regularly by paeds. Because of his weight and size (he was off the chart, and still is) we decided to investigate. He was seen by the genetic team at great ormond street and we explained that we'd had a cvs and all appeared normal. However, the dr said that the chromosomes taken from the placenta are all bunched up and more difficult to read and that blood from ds would show a more accurate reading. We waited 3 months while they went through every chromosome and eventually we were told he had a small deletion on 22 which meant he has 22qdeletion, (second most common to downs) also known as di george syndrome. He hasn,t inherited it from us, we were checked as well, it was just unfortunate. However, this is not a sad ending. He is absolutely gorgeous. He has luckily escaped most of the probs that this can cause i.e. Heart defect, facial dysmorphia, low immunity, palate problems, Kidney probs, glue ear etc. He is small and has mild global development delay, but he is brilliant, he looks like the other two and they love him and are very protective. We will wait to see what happens as he grows up and will deal with any difficulties as they arise. I get vey emotional thinking that if they had found this chromosomal abnorm from the cvs, maybe we wouldn't have gone ahead. You can't be guaranteed a perfect baby.

Sorry you're going through this, it is a very worrying time.

Thank you to everyone of you that has posted. Every one of your posts has given me more to think about. It is such a horrible time and your posts meant a lot.

This morning, I am in denial- maybe I am one of the 14, not the 1.

Hello bear, have you had amnio or CVS?

Jaffa went to have the cvs on weds but placenta in the wrong place so could not access it. We are back to hospital this week for animo, won't get the results till next week. Arranging lots in the meantime to try to forget about it all (ha ha ha).

Good luck HelloBear, both with the tests, and the distraction techniques.

The day after the CVS I felt physically very drained, much more than i expected. Not sure if this is everyone's experience, but definitely worth trying to minimise any plans. I took the day off (do they advise you to go this? It was only 4 years ago but I can't remember now).

The actual CVS wasn't bad.

We also had a 1:15 risk. However, please remember it is only a risk assessment. A 1:1000 risk doesn't mean that your baby is definately unaffected, so a future pregnancy with low risk could be a baby with Downs, it's life's lottery. We weren't prepared to terminate, so also didn't bother with amnio/cvs (previous m/c and weren't taking any chances). We did have a detailed 3d scan at a private clinic where the consultant specialised in fetal scanning for abnormalities and it was very reassuring. DS was not born with Downs. As a midwife I have seen plenty of unexpected births with chromosomal abnormalitites, so I think anyone being pregnant must be prepared that this may be the hand you will be dealt. I do understand the worry and I hope you get the peace you want whatever you decide.

Excellent advice from Mrsmuppethead, there are no guarantees in any pregnancy.

Good news! I am one of the 14, not the 1! My results came back all clear today for Down's, patau and Edwards,
I still have a bit of worry about the cvs- I have slightly odd discharge. But I have been checked by 2 doctors and they think it is fine so I have to stop panicking!
Thank you for all your thoughts. Everyone was appreciated.
hellobear I hope you get good news too, and don't have too long to wait.

JaffaSnaffle that's wonderful news, thanks for letting us all know, you must be so relieved.

Jaffa really happy for you! May you enjoy the rest of your pregnancy :)

Lovely news jaffa.

Great news, enjoy the rest of your pregnancy! :)