Declining antenatal screening tests

[MyBreadIsEggy]

Has anyone else declined antenatal screenings and been treated like a [word removed by MNHQ for being disablist] because of it?!
I declined any screening with DD, and have done so with the pregnancy too. The midwife I spoke to just kept saying "are you sure?", "do you really understand what you're saying no to?", "have you even read the booklet?" etc.
Yes I've read the booklet. Yes I know what I'm saying no to!
We have done our research, and according to everything on the NHS website, we pose a low risk of our baby having a chromosomal disorder (I think it's 1 in 1500 for Down's Syndrome and even less for Edward's Syndrome or Patau Syndrome).
We don't feel the need to know if there were to be anything wrong with our baby. And surely that is a desicion that should be respected by our MW?
I am quite young, and the MW's I saw (except the one that delivered DD) were very patronising throughout the whole process, and from speaking to other young mums that go to the same groups as me, their experiences were quite similar.
I don't want to come across as an arsehole to the MW, but I want her to stop trying to talk me into something I don't want to do!

Banana this is news to me.
I had my dating scan at what was supposed to be bang on 12 weeks - it turned out I was actually 12+6 - so I could have had a nuchal scan at the same time?

I'm a sonographer. It's probably about 50:50 people who want screening and those who don't. We're not worried if you have it or not, it's your own choice.
In our hospital when patients are booked with the midwife they sign a form to say they've discussed screening options with midwife and if the consent or decline. We will ask again during scan as people often change their minds once they're there for scan. Midwives who make you feel like this shouldn't be doing that job. Consenting too and declining of tests should be documented all the way through.
People who do decline will almost always have the anomaly scan although we don't look for soft markers on scans anymore as they're no longer relevant.
There was meant to be a new blood test released a couple of weeks ago as part of the combined screening, however due to issues with it it's now been stopped. (Wether this is a local issue or national I'm not sure at the moment)
On a personal level, I didn't have it done. Locally we had an issue with the labs giving people incorrect results, resulting in in nessesary invasive testing. plus I wouldn't have had a termination anyway even with my higher risk of downs due to family history.

My youngest is 6, and I declined blood tests when I was pregnant with him. At that time, NT tests weren't offered I. My area, so the blood test would give a risk assessment which could be followed up with amnio. I wouldn't have aborted for Downs, and didn't want the risk of miscarriage which goes with amnio. I had the 20 week scan so I would be more likely to know about any conditions which might affect the baby, and which would affect the place of birth, medical care etc.

Most people I know made similar choices for second babies. By then, most of had encountered people who'd been stressed by blood test results and had a healthy baby/ had a baby with serious problems not detected by the blood tests (or even the 20 week scan, and I knew someone who lost a baby after amnio, which made me very wary.

The midwives treated this as a perfectly sensible choice, once she'd checked that we had reasons for choosing it.

We were given the quadruple test when we shouldn't have been. We couldn't do an NT at our first scan because we found out we were having twins and they couldn't get the NT measurements.
They offered the quad test instead, without telling us that it's not reliable for multiple pregnancies and the results would be extremely high risk.
Of course, when the results came back as 1:18 for the pregnancy as a whole (for all 3 trisomies), we were offered an amniocentesis (also a higher risk procedure for twins).

We opted to pay privately for a NIPT test, which came back as negative for all trisomies.

We then found out that most Trust's don't offer the quad test for multiples, as it's so unreliable. I'd rather have had nothing (or been offered nothing) than the quad test.

We had a shitty few weeks worrying about not only having 2 babies at once (as we'd only just found out about having twins), but the worry that both babies might not survive, or could have special needs.

Gosh Feck! Your midwife did a terrible job explaining your option to you. That's really, really bad.

I had my dd1 in 2012 and we had combined screening with her(which I assumed was the norm, it's not a new technique) she was right in that you don't get a dating AND and nt scan but that's because they do the nt measurement and they date you in the same scan.

That's really, really bad! I absolutely respect everyone's decisions around screening but it is absolutely wrong to have to make screening choices not only without full knowledge but with inaccurate information!

Bananas yes that's how I understand it. We always said if our harmony came back positive for T21 we wouldn't have a cvs or amnio as 99% is enough certainty for us and we wouldn't have a termination but would want more specialist scans etc (with the understanding that there is still a high chance that the baby would be stillborn)

I think the invasive procedure would only be if you were considering a tfmr. Personally I wouldn't be happy terminating on a 97% accuracy (which it is for T18) I found it hard terminating after an amnio diagnosis, I had to ask a few times that they were sure they hadn't mixed up my results (denial, I had shocking blood work and 4/5 soft markers on a scan)

feck yes that's exactly when the NT would normally be done, if you choose to have it

Does screening for Down's syndrome happen at this scan?
This depends on whether you have agreed to have the screening and when the scan takes place. Screening for Down's syndrome will happen at the dating scan if:
• you have agreed to have screening for the condition
• the scan takes place between 11 and 14 weeks of pregnancy
The screening test for Down's syndrome used at this stage of pregnancy is called the combined test. The combined test involves a blood test and measuring the fluid at the back of the baby's neck (nuchal translucency) with an ultrasound scan. This is sometimes called a nuchal translucency scan.
The nuchal translucency measurement can be taken during the dating scan. If you have agreed to have screening for Down's syndrome, the dating scan and the screening will usually happen at the same time.

I was high risk (aged 43) and declined as wouldn't have had an abortion, and didn't really see the point in that situation. No one batted an eyelid.

On an off shoot mermaid I'm so happy your nipty came back clear. You have been treated terribly in regards to your testing and screens.

Did anyone get a Down's Syndrome result from the combined testing but not the other two? I wanted them all done, but when the letter came it only mentioned Down's.. I'm in Newcastle if that makes a different - not sure if different health authorities offer different tests?

Yes some authorities only report T21. They have a responsibility to reportt13 and t18 if you are considered high risk I think (which is normally more than 1:150 although it seems this is different across trusts as well)

Sophia mine only mentioned trisomy 21-I just assumed that the others would have been brought up if necessary.

Feck my nuchal scan and dating scan were exactly the same scan. With DD1 it was at 12+5 and with DD2 at 12+6. Sounds like your midwife did a really bad job of explaining things to you.

I didn't have the NT screen or combined test, but did have the scans and am so grateful I did because one picked up a major heart defect which enabled a complex care plan to be put in place and my DS is now perfectly healthy, nearly 2 years old. He could have died without it. Some screening saves lives. But I don't regret declining the NT/combined test.

Sophia I got told after the results of my combined test came back that they didn't test for Edwards or Patau, only Downs. I wasn't very impressed as I had gone for the screening under the impression that it was for all 3. I have no idea why they wouldn't look for T13 & T18 if they've got the bloods anyway. I'm in Tayside.

I declined too as it wouldn't matter either way I'd still keep it.

I'd definitely want Edwards and Patau, personally. As to me they're a different issue to Downs. That's about raising a child. The other trisomies it's about preparing for a baby that will die in utero or at birth. I cannot even imagine the pain that friends who've suffered stillbirth went through when they had to return home to nurseries and houses full of baby stuff.

The 20 scan was not offered in our area so I never had it for any of my three pregnancies. And my children are not that old.

I had dating scans at 12 weeks and blood tests. That's what everyone I knew had.

I understand what people say here about preparing for problems, but I also think these tests bring a great deal of anxiety at the same time.

Your choice and you shouldn't be made to feel uncomfortable.

The only thing I'd say is that there is at least one test which can highlight medical problems that may create a risk to the baby before it is born.

I recently had a high AFP result. It can be a sign of neural tube problems such as Spina bifida. Luckily my baby doesn't have these or any other detectable abnormality. People with a high AFP reading are given extra monitoring and scans as it can be a sign the placenta isn't working very well, the monitoring should allow intervention if the placenta fails (potentially fatal to baby). I didn't know any of this before I got the test result.

So some tests could help highlight things that will make a difference to how the pregnancy is managed.

We declined but the MW didn't even try to persuade us which I liked

I have got 3DC and did not have the blood tests for any of my pregnancies. I did have scans, which would likely pick up anything e.g. heart problems, that would need to be treated at birth.

As you are only given a risk factor, the test is not conclusive anyway, and I knew I wouldn't have an amino. A friend was given a 1:2000 risk of Down's syndrome and her DS was found to have it at birth.

Not one of the midwives I had was surprised, in fact I thought it was reasonably common.

I'm expecting DC4

I have declined screening with the first three but this time I have decided to have it done

The reason I've chosen to be screened is because of the impact a child with one of the conditions could have on the children I already have

They have to come first

I didn't view screening as something that would automatically lead to a TFMR if there was something 'wrong'. For me it was about being informed and prepared so our baby would be offered the best possible care and support once they were born.

Fortunately, all three of our boys are healthy - but I know of others for whom ante-natal screening proved crucial. For one baby it resulted in heart surgery whilst still in the womb and it is very unlikely he would have survived without it. He is a healthy child now thanks to that procedure.

Just wanted to make the point that screening isn't just a way of rooting out and doing away with babies that aren't 'perfect' but about helping families and medical teams get ready to care in the best way possible for each new baby.

I had screening with my 16mo son, which came back with a 1:82 chance of issues. This terrified the hell out of me but, after talking to people who had had similar results with no issues and others who'd had clear screenings (very low odds) but had been that 1:10,000 I decided that there was no way I could risk miscarriage, this was mainly backed up in my mind because the nuchal scan looked great - perfect ranges. I guess if the scan measurements had been poor I may have reconsidered.

This time (31 weeks pg) I declined screening tests because the soft markers would indicate (in the majority of cases - as told by the specialist midwife last time) something to look further into. This time a poor result would still have stressed me out and I would still have been very unlikely to have an amnio, let alone a termination, so it was a bit of a hiding to nothing! No one batted an eyelid that I can recall.

Screenings are not just to decline abortion if an issue was to arise.

My son was diagnosed with a rare heart condition at our 20 week scan and I was certainly not going to abort but we had to prepare to try and save him. This included for us becoming knowledgeable about his heart condition and what would happen. It meant choosing the hospital he would be born in (not all hospital do open heart surgeries on babies) and being ready to live there for weeks/months. As mentioned before, some children with heart condition die quickly after birth if they don't receive surgery and in most cases, a special drug to keep their circulation as an unborn baby. If your child is rushed to another hospital after being born, you up the risks. Also, children who have a very poorly heart do not well in ambulance transfer sometimes as their heart rate goes up when they are being moved too much and there is only so much you can do in an ambulance.

I will be having all tests possible with this pregnancy too but that does not mean I will abort if there is a problem, it means I am ready to deal with what could be coming by preparing as much as I can.

Screenings are also for your health. They can detect whether there are any issues with your placenta (e.g. placenta previa) that can meet you need to be monitored and possibly have a C-Section.