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Not having Down syndrome testing- anyone else?

(102 Posts)
amy246 Thu 27-Mar-14 18:19:36

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.

Sulis Thu 27-Mar-14 18:20:37

I didn't with any of mine. Knew I'd do nothing about any results. In fact we had very few screening tests at all.

shakinstevenslovechild Thu 27-Mar-14 18:23:13

I didn't have with any of mine either. Only one midwife was horrible about it (in 5 pregnancies) but I had my reasons ready and told her I wanted no further discussion about it.

FannyFifer Thu 27-Mar-14 18:25:45

I declined on both pregnancies as it would not have made any difference to me.
Got really harassed about not getting it though.

Bambamb Thu 27-Mar-14 18:26:09

I didn't with any of mine. We knew we would never end the pregnancy so felt we'd rather not know.

morethanpotatoprints Thu 27-Mar-14 18:27:54

I didn't have mine either as knew it would come back as a high chance just through age.
My mw told me that no matter what the result it would be high risk, so we didn't bother apart from the normal tests you would have done.
You do worry, but pregnancy is full of uncertainties anyway.
I was more interested in finding out the sex as we had 2 ds who we hadn't found out with.
If it was a girl I wanted to buy some pink things before hand.
DD is now 10 and right from the start really didn't suit pale pink, she is quite dark grin

DrewsWife Thu 27-Mar-14 18:28:28

We are trying to conceive and as DH works with that client group we are not going to test if we manage to conceive.

We both love children regardless of ability or not.

I'm glad to see there are others not testing

washngo Thu 27-Mar-14 18:30:33

We never had the screening. Nobody ever queried our decision, but our reasoning was that we wouldn't have done anything about it if the result came back high risk.

Armadale Thu 27-Mar-14 18:32:39

I declined in this pregnancy, except for having the papp-a blood test as I have a history of placental problems and that is useful for that.

We knew we wouldn't abort, and we also felt that I would probably come out with a worrying score anyway due to my risk factors (age, weight and previous losses for chromosomal problems are all factored in) so it was bound to be a bad number that may needlessly overshadow the pregnancy.

We also are morally opposed to downs syndrome abortion, so felt we didn't want to be part of the system if that makes sense.

We had one snotty consultant about it, and one sonographer at the 20 week scan who really made a meal out of checking the baby's heart 'because we had chosen to be in the dark' but everyone else was fine.

furlinedsheepskinjacket Thu 27-Mar-14 18:37:07

I chose not to have any tests with retrospect I am so pleased I took this decision as she was born with a v rare life threatening condition which confused a few drs - I am not sure what they would have made of any test results prior to birth.
my baby was going to be my baby whatever. smile

VeryStressedMum Thu 27-Mar-14 18:38:42

I didn't have any tests, except for nuchal fold for my first 2, they don't offer it where I am now so didn't have it for dc 3. I wouldn't have done anything about any result I got so I didn't see the point. Looking back, on that logic I probably shouldn't have had the nuchal fold, but sometimes you don't think of things until after.

Patchouli Thu 27-Mar-14 18:42:41

I didn't. I also knew it was going to come out as high risk with me being older anyway.

LynetteScavo Thu 27-Mar-14 18:44:23

I declined, because I wouldn't have taken any action based on the results.

One consultant I saw when I was overdue was bemused (after he'd had a little faff looking through my notes unable to find the results). I'm guessing I was the first woman he'd come across to chose not to be tested.

alita7 Thu 27-Mar-14 18:46:56

it wouldn't stop me having my child even at only 8 weeks I feel I couldn't abort unless it was certain my child could not survive to birth.

I would take on anything and the lovely thing about people with down syndrome is that they don't normally have insight into their differences and usually have very happy personalities so I wouldn't feel I was being selfish by keeping the child.

I would want to know though I think just to prepare myself mentally. but I would go for a harmony or nifty test rather than the invasive ones on the Nhs.

isisisis Thu 27-Mar-14 18:46:57

I had the nuchal fold just so I could be prepared if it came back high risk. I wouldn't of terminated but would of liked to of planned a bit. I discussed with my midwife before that if it came back high risk I would decline amino but want to discuss harmony or other non invasive testing.
If it was positive part of my plan would of been to deliver at 1 of our 2 local hospitals as they have a paediatric cardiology team.

Beamur Thu 27-Mar-14 18:47:14

We had no tests. I was 36yrs old. Midwife v supportive of my decision.

uvavu Thu 27-Mar-14 18:50:26

Well just to put forward another point of view, I had the nuchal fold test and would have gone for further tests if I was high risk. Not because I would abort if there was anything found (unless it really was incompatible with life), but I wanted to know and be fully prepared/read up on it. Also it can help the Drs to know in advance if the baby will need extra care once it arrives.

Moreisnnogedag Thu 27-Mar-14 18:55:20

Nope refused with DS. Midwife was a cow about it though, DH had gone to make tea (home visit) when it came up. She waited until he came back and then asked "did you know your wife wants to refuse an important health screening test for your baby?" When he obviously agreed with me, then she asked me if I understood what downs was. I'm a doctor.

Do what you feel is right. If you're just going to stress with a high risk result but not do anything, then I wouldn't do it - which were my reasons.

Slippydippysoap Thu 27-Mar-14 18:57:14

The idea of testing for Down's syndrome makes me very uncomfortable so I have never had any of the tests and my midwife has been wholly supportive.

lyns31 Thu 27-Mar-14 19:02:57

I wouldn't have aborted and like you op was too far gone for the nuchal. I had the quads and came back low risk at 31 but I felt knowing ahead would give me time to prepare. However, I wouldn't have had an amnio or cvs as the risk of miscarriage is just a bit high for me.

comedaygoday Thu 27-Mar-14 19:15:02

I didn't test with any of my 3 DC. I know people who have had a vhild with Downs despite a low risk result and conversely people who have been horribly worried by high risk results and everything has been ok. I was prepared to risk a MC through invasive testing and knew that in any case I would choose to continue with the pregnancy.

None of my children habe Downs, but DS2 has ASD . If I have more children I will.again not test for Downs.

comedaygoday Thu 27-Mar-14 19:16:07

Sorry I WASN'T prepared to risk a MC.

sisterofcaleb Thu 27-Mar-14 19:18:34

I didn't have the test for either my son or this baby (currently pregnant). I wouldn't terminate under any circumstances, and also wouldn't have a CVS or amniocentesis if I came back "high risk" due to the small risk of miscarriage. Therefore there seemed no point to me in having it.

HandragsNGladbags Thu 27-Mar-14 19:20:30

I wasn't going to as I wouldn't have aborted. My midwife said that if there was a problem however it was best for the doctors to know so they could manage the birth better and ensure proper care was given immediately.

That swayed me to test.

Me23 Thu 27-Mar-14 19:21:59

Totally your decision obviously but remember it is not just screening for Down's syndrome but also pataus and Edwards syndrome which have an extremely high morbidity and mortality rate.

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