Not having Down syndrome testing- anyone else?

[amy246]

After being too far along for the nuchal fold testing, I have since declined the quad test. I feel that at 17 weeks I wouldn't want an abortion anyway. The only thing is I'm worried this is a silly idea and that I should have just had it done anyway. Any thoughts? Anyone else declined the test? I think I just need to hear that other people also did this.

[yummymumtobe]

Dinosnores, I am very sorry about your baby. X

I think it's about being prepared - as others have said, you may need time to plan eg whether to go back to/change work, decisions about moving etc. we were planning to move but if I had found out we were having a baby with additional needs we would have cancelled our move and stayed closer to family and our places of work. The point about being prepared for extra care in labour is also important. Imagine if there was a problem that could have been helped had you been in the right place for labour with all back up necessary. Sometimes despite all intentions babies just arrive in the back of a car or something! I think also the hospital need to cover the fact that people may change their mind. I am sure there are families who don't test and then they are angry when they find out the baby has SN or dies on birth and complain to the hospital or, worse, reject the baby. I KNOW we all say that we would never reject a baby and accept it could die and it was our decision not to be prepared, but in the rush of labour and hormones I am certain some people would change their minds.

[squizita]

No it's not silly . I think the fact that the test even exists is a terrible reflection of our society that would terminate a pregnancy for anything less than a " perfect baby"

Or doesn't want to give unprepared birth (i.e. home birth or in a small birthing centre) to a baby with a condition which routinely needs support with his/her heart (a symptom of Downs).
Or wants mum to be prepared for the practical side of properly parenting a child with additional needs ... without having to suddenly read up, meet healthcare professionals, join parents groups suddenly in the exhausting weeks following birth. So they can prepare.

My gut reaction to not testing is that it is reckless... although I don't know how many babies with undiagnosed Downs Syndrome end up with a more 'emergency' start in the hospital or how many mums perhaps are slower getting the support they're entitled to because someone told them you only test if you'd terminate. Hopefully a tiny number.

It actually makes me at society how few women are informed that because they would love and cherish a child with special needs, risk to that child can be reduced by being prepared. The blithe "wouldn't terminate, don't need it" I keep seeing again and again (even from midwives) concerns me.

[PenguinsEatSpinach]

Also, if you have older children, the decision whether to continue a pregnancy if the baby has Edwards or Patau syndrome has an extra dimension. As does preparing the children if you do.

[HumphreyCobbler]

Oh. Finding out meant that I didn't give birth to a baby who immediately died. As that was the only possible outcome of my pregnancy. It wasn't about not having a perfect baby. I find that viewpoint unbearably offensive actually

He was my baby, even though he was going to die. He was still my baby.

[Tinkleybison]

Humphrey. I've been there too.

Unbearably offensive pretty much sums up how I feel about that comment as well.

[PenguinsEatSpinach]

So sorry for both your losses.

[helenlouisey]

Soontobesix what an ignorant and offensive post. It's not about terminating for anything less than a perfect baby, sometimes it's about terminating a pregnancy instead of watching your beautiful baby die in pain at only a few hours or days old. I too thought I'd never terminate a pregnancy, even suggested to my husband that with my 2nd pregnancy that we didn't have the testing. I went ahead with the testing and sadly it revealed my baby had Edwards syndrome, and would die either late in pregnancy or at birth or shortly after. It was the most heartbreaking decision of my life, and 5 years later there's still not a day that goes by that I don't think about my baby. However I know I made the right decision for me and my family and for my baby. It wasn't about wanting a perfect baby it was about wanting a baby that would live.

People really shouldn't be so judgmental till you've walked a mile in someone else's shoes !

[Cariad007]

Back in days before scans and testing, my cousin had a daughter with Downs, a severe heart defect and mobility issues which meant she eventually wound up in a wheelchair. Every day of her life was a struggle, until she died at 13. Another friends baby was found to have Edward's syndrome at 12 weeks so she terminated. Even though it devastated her it was ex kindest thing to do.

I would never ever judge anyone for TFMR (or indeed any other reason), so how dare you Soontobesix. I hope MN removes your very offensive post.

[isisisis]

Actually, I hope Mumsnet allows soontobesix post to stand as the following posters have challenged her comments so eloquently & completely.
I'm so sorry for the losses some of you have experienced.

[PenguinsEatSpinach]

I would also add that people who choose to terminate for Downs rarely do it lightly or without serious heartache.

In my first two pregnancies, I wouldn't have considered it. My third (current) pregnancy was a surprise, and I came out high risk. I decided to have amnio because at the very least I needed to know where I stood. Thankfully all was fine. Would I have terminated for Downs' syndrome? I honestly don't know. Not for any reason of wanting a 'perfect' baby, but when you are already stretched to full capacity, already worrying how on earth you will manage to parent another, a decision is nothing as flippant as seeking perfection.

[Patchouli]

The test can't diagnose anything though. It just determines risk.
Then what are you going to do with that info?

It's not a case that I wouldn't have an abortion, I also knew I wouldn't have an amnio.
I was happy with the scans and midwife appointments when it came to checking for possible heart defects.

[PenguinsEatSpinach]

Patchouli - But if finances permit you can have Harmony for a far more accurate risk. And if I had been given a risk like 1 in 3 from NHS testing, I'd still have changed my plans for a home birth, I'd still have read up in great detail on sources of support for Downs' syndrome, etc, even if I had been clear that I wouldn't have amnio. And many people who wouldn't have amnio for a high risk of Downs syndrome might well for a high risk of Edwards.

It's a personal choice, obviously, but for a lot of people "I wouldn't terminate or have amnio" is very far from a complete picture of the factors they are considering.

[ThatBloodyWoman]

I declined all tests with both pregnancies.DH was in full agreement, and we had zero pressure from consultant/midwife to do differently.

[AntoinetteCosway]

We declined the nuchal and subsequent tests last time and this time as we knew we wouldn't abort. I'm shocked people came across resistance to that decision-all the midwives we've dealt with have been completely fine about it and it's not been mentioned after the question was first asked. Maybe because we're quite young-27 last time and 30 this time?

[DramaAlpaca]

I declined all tests except the anomaly scan with all three pregnancies, with the full support of DH and also the midwives.

[amy246]

My biggest issue with this test is that it only determines 'risk'. And then based on this hazy result you have to make very difficult and potentially harmful decisions: having amniocentesis and risking losing a perfectly healthy baby due to miscarriage or infection from the procedure. Not to mention the stress and mental anguish. I can't think of any other test which is this non specific but with such potentially dreadful consequences.

[RufusTheReindeer]

Agree with sqizita

Had all the blood tests going, when ds1 came back as high rusk I did not have the amnio as I wasn't prepared to risk a miscarriage

I would not have aborted him if he had downs but I wanted to prepare myself and my family

I think it's a very insulting comment to say I didn't get tested as I wouldn't abort, there is not always a link there

[squizita]

I'm still shocked that midwives think it's all about termination.

It almost reminds me of those states in America where they rail against termination but have no support once the baby has been born, politically.

So it comes across as pro-life not to test... but likewise it means the baby with additional needs might not have everything in place for them from hour 1, day 1. Which could actually put a life at risk (e.g. with rural home birth for example).

[PenguinsEatSpinach]

Well, there is a whole area of discussion about whether the risks of amnio are over-stated, but that's rather off topic and I don't want to side track.

But the fact that it only gives risk is precisely why you can decide not to have the tests. That isn't an 'issue for everyone, and has been mentioned the new Harmony test is giving some people (who can afford it, currently) more options.

[RufusTheReindeer]

Still agree with squizita

I asked if I could have the amnio after 30 weeks as there is virtually no risk to the baby (or that is what I was told in the old days)

The dr looked at me as if I'd gone mad and said but you won't be able to have an abortion then!

[AntoinetteCosway]

'I think it's a very insulting comment to say I didn't get tested as I wouldn't abort, there is not always a link there'

Please don't be insulted-that was MY reason (well, one of them) but it doesn't mean I think it's the only reason. There are lots of reasons not to test and everyone's decision is personal.

[RufusTheReindeer]

antionette

Don't know why I even commented to be honest, the last tests I had are over 11 years ago...they have probably all changed!

[Mumto3dc]

I've 3dc and I declined testing for all 3 pregnancies.

I was given great advice by a midwife in my first pg who advised me to consider it carefully because if I didn't want to have an amnio or a termination then the tests could cause unnecessary stress.

I'm shocked that people have been criticised or pressured by HCPs, I've never had so much as a comment in any of my pregnancies.

However, I'm now 39 and newly pg with dc4 and this time I'm seriously considering testing, got lots of research to do now though as I've not gone into it in any detail before. Although now it seems there is a better non-invasive test available so my decision may be different.

[OrangeMochaFrappucino]

This is really interesting to read. My understanding from the information I was given was that the test was just for Down's Syndrome and that all you got back was a number which you then had to use to decide on more invasive testing, which my midwife emphasised carries a risk of miscarriage. I would say I was actively discouraged from the screening.

I believed the only check for Edward's or Patau's were at the 20 week scan.

Because I declined the screening in my first pregnancy, it was assumed I wouldn't want it this time either. I am planning a home birth in the next few weeks and I see people's point about a worrying test result affecting that choice.

It's not something I have worried about but I can see from this thread why screening may be a good idea.

I am very grateful not to have been in the position of making a decision on the future of a pregnancy due to bad news and I would never presume to say I would/wouldn't do anything in that position. It's too heartbreakingly painful for me to imagine.

I don't plan on any further pregnancies, but if I changed my mind I think I would find out more about the screening as I feel like I perhaps haven't made a fully informed choice - I might still decide against it, but there is obviously more to it than I knew.

[DinoSnores]

jelly, some hospitals do only give you the risk of Down's syndrome. Some also give you the risks of the other trisomies, so you might only have had the risk for Down's calculated.

rufus, had DD1 survived to about 36 weeks, I was told that, although we had declined invasive testing earlier due to the risk of miscarriage, we could consider a late amnio when the risk is of preterm labour to allow us to make proper delivery plans depending on the diagnosis.