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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

to not want the downs syndrome test

88 replies

PrincessScrumpy · 23/01/2011 20:02

I've never been a betting person so to get odds as to whether you baby is one way or another seems pointless to me. I'd just spend pg stressing. DH and I have a strong relationship and one dd. We didn't test with her and don't think we'll get tested this time. We wouldn't abort anyway so would there be any point?

Am I unusual? All my friends have had the test.

OP posts:

Original poster

PrincessScrumpy · 23/01/2011 20:19

If it gave a yes/no answer then it would act as an opportunity to prepare but you still don't know for sure so I don't think it would help.

I'm decided, I won't have it. Love this baby already - especially as he/she isn't giving me morning sickness (yet).

Thanks everyone,

Friends were making me feel like I was turning my nose up at NHS service.

OP posts:

Violethill · 23/01/2011 20:19

YANBU - many people don't have the test because it won't make any difference to the outcome of that pregnancy for them anyway.

I didn't have tests with any of mine

MrsRigby · 23/01/2011 20:20

No YANBU

I didn't have the test with all 3 of mine and wouldn't with hopefully future pregnancy's. The outcome wouldn't make any difference as I'd never abort.

SE13Mummy · 23/01/2011 20:20

I didn't have the nuchal fold measurements taken at the 'first' (for DD2 it was actually about the 5th scan - I had them fortnightly) scan because the outcome would have made no difference to how DH and I felt about the pregnancy.

ReclaimingMyInnerPeachy · 23/01/2011 20:21

YANBU

It's pure choice

i;ve had with some and not with the last (by which time we already had kids with SN). It really is for each couple to decide.

I had the tests with teh first three for the 'know what's coming and be prepared' thing: i;ve nursed people with very severe DS so know the reality of the most severely affected end of that spectrum. However, that sort of shot us in the foot as with ds3 we were told we were very high risk, I woudln;t have amnio and had a very detailed scan instead where they told us that although there were no asnwers ds3 had no amrkers and they were pretty certain the likelihood of DS was low.

he has fairly marked autism, presented very similarly to DS until recently though taking more of an ASD path now.

nicolamumof3 · 23/01/2011 20:22

i haven't tested with any of mine, and am now pg with dc4 15w. Haven't tested this time either. Im 35yr.

julybutterfly · 23/01/2011 20:24

It's not just a 'down syndrome test'. I was talked out of having it by my midwife with DD2 - if I'd had it then I wouldn't have had to wait until our 20 week scan to find out she had a fatal condition which would have been picked up if I'd had the triple test. It would have meant I could have had a d&c and wouldn't have had to go through labour at 22 weeks

Up to you though!

ReclaimingMyInnerPeachy · 23/01/2011 20:26

It's very true that it's not just dds

It is important that women should be told more fully what is and isn;t testable

I meet people on one hand who thiunbk it's just for DS and that all people with DS are happy go lucky easy souls

And on the other that a clear result menas their child is perfect and no disability could ever befall them

Education is key

ReclaimingMyInnerPeachy · 23/01/2011 20:27

Sorry perfect should be in 'perfect' format

My asd boys are perfect, in my eyes

sevendwarves · 23/01/2011 20:29

I didn't, although I'm pretty certain my MW thought it was odd that I didn't want it.

"I suppose that it might give you a bit of time to make extra preparations"

If the odds aren't great you won't know for certain without amnio anyway, which carries a 1% miscarraige risk. If you know you definately wouldn't abort it isn't worth it.

BrokenBananaTantrum · 23/01/2011 20:29

The only reason I had the tests done was so we could try to prepare better. Termination wad never an option for me but there would have had to be changes to our plans such as either DH or me giving up work instead of going back after six months. If you are not going back to work or feel you don't need time to prepare then don't bother. It is absolutely your choice. Good luck with whatever you decide.

Original poster

PrincessScrumpy · 23/01/2011 20:30

What does it test for - mw only mentioned ds last time (4 years ago).

I know there is a whole spectrum with ds but I'm a what's meant to be is meant to be type person.

tbh, dd1 is so wonderful, part of me thinks we won't be as lucky this time. I know how that sounds but it's how I feel.

OP posts:

undercovamutha · 23/01/2011 20:31

YANBU

I wasn't going to have it as knew I wouldn't abort. However, although DH agreed we wouldn't abort, he really wanted me to have the test so we could be prepared if there was a problem.

As he felt strongly, and as it was unusual for him to have such a strong opinion IYSWIM, I had the test.

As it turned out it was fine both times. Not sure how I would have felt if a risk was identified.

sevendwarves · 23/01/2011 20:33

Sorry, i meant odds of DS, as that is what the OP was asking about

ReclaimingMyInnerPeachy · 23/01/2011 20:35

ARC

chelstonmum · 23/01/2011 20:36

I didn't with my first two, and nor do I intend to with this one.

My own mother was born with spina bifida, when she arrived the midwife offered to 'have her taken away' before my grandparents got to hold her as she was imperfect and would have 'very little quality of life' She is now a married mother of four, with a bundle of grandchildren and the kind of life I aspire to!

I don't know how many silent bargins I made with god over negative clearblue sticks............but I am happy to take what comes and will love this baby unconditionally.

HumphreyCobbler · 23/01/2011 20:38

There are other chromosomal issues that can happen. Edwards and Patau's are the most common next to Down Syndrome. They can be terminal conditions.

Sadly I know this because I had a baby with Patau's. I found this out at a 20 week scan due to severe and life limiting abnormality.

I still, however, think it is perfectly reasonable not to test if you wouldn't do anything about it if something was found. I did not have invasive testing with subsequent pg, although I did have a nuchal plus bloods and would have had a CVS had the odds been against us.

I just think it is important to realise this is not just a screening tool for DS.

PlanetLizard · 23/01/2011 20:40

Agree with HumphreyCobbler.

"I do want to point out that the test is for other, possibly life threatening conditions such as Edwards or Patau's syndrome."

Carrotsandcelery · 23/01/2011 20:44

I refused the AFP test and my midwife sent me to the gp for counselling. She actually said to me, "Only the Catholics refuse the test" (Dh is infact a Catholic but I can't see why that would or wouldn't be relevant)
When I went to the gp I explained that from my research I knew I was at high risk of an abnormal result as I had had a partial miscarriage (dd was a twin).

I knew the next step would be an amnio and there was no way I was taking that risk after dd had hung on through what had happened earlier in the pregnancy.
I knew the test would say I was at risk and I would just spend the whole pregnancy worrying when I was prepared to accept what came my way and knew I would love dd no matter what.
The GP agreed with me that in my circumstances that it was pointless.
I did ask him if the test would tell me anything that could help the baby and he said it wouldn't - the scan would be the test that told me if there was something that could be done to help dd if she needed it.
I think that leaves it in your hands. You would not be unusual not to have the test. If your midwife is a bigot old fashioned then you might have a mini battle on your hands but stick to what you believe unless someone can give you strong medical reasons why you shouldn't.

princesspuds · 23/01/2011 20:50

If you have the triple test, they also test for Spina Bifida, I had a raised level of AFP in my blood results and was asked to attend hospital for an ultrasound where it was confirmed that my DD had Spina Bifida.

I declined any other testing apart from having to have an MRI at 7 months pg to see the extent of the defect in DD's back, it was helpful in that we were prepared, the only downside was the dickhead consultant who I had first of all who kept on trying to persuade me to terminate by telling me that dd would die in utero or shortly after birth, didn't give me any info and ignored me on his ward rounds when I was admitted with Pre Eclampsia.

I was fine after telling him where to go and transferring all my care to a hospital 50 miles away as it was where dd was booked in to be born as she needed surgery straight after birth.

oldraver · 23/01/2011 20:53

Some people just want to be forewarned. I booked my Nuchal when I attended the EPU at 7 weeks (the clinics are run by the same people). I very nearly cancelled the Nuchal as it really hit home that I wouldn't abort for Down Syndrome. I also was not having CVS/Amnio due to the M/C risk factor. I still went ahead with the Nuchal and I did have a low 'risk'. It was just one less thing on my mind

PiccalilliShinpads · 23/01/2011 21:01

I refused further testing after my DS4 was diagnosed with talipes (club foot) at the 20 week anomaly scan, we were told that the talipes could be indicative of DS, Edwards or Patau's syndrome.

We decided to have an in depth scan and the sonographer couldn't find any other pointers (facial or genital deformities) which would suggest Edwards or Pataus - not that it would have made any difference, we would have continued with the pregnancy anyway

What shocked me was the comment the doctor made - he asked us if we wanted to 'interrupt the pregnancy'

I mean WTF - interrupt the pregnancy? Oh you mean we can stop the pregnancy and pick it up at a later date? Fucking idiot!

PurpleCrazyHorse · 23/01/2011 21:05

I didn't have the test either as we decided the results wouldn't matter anyway.

chelstonmum · 23/01/2011 21:07

Princessspuds, It is really sad to see some oppinions have not changed in fifty years! I hope your dd thrives as much as my dm has. x

mumbar · 23/01/2011 21:18

I didn't. As mentioned above, I was having my baby whatever, and I know that anything can happen before, during and after birth.

It is personal though and I fully understand why some would chose to.

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