I just dont know what to do - 12 week scan

[lozzy1982]

Ladies i am so torn,

I have my 12 week scan on friday, and after a chat with the hubby, we decided to opt out of the chromasomal downs testing. Really because, i always said, if anything came back, i would never hve an abortion, so what was the point of testing?
Now though, a close friend of mine who has had the test, her results have come back and turns out her baby has a really bad heart condition. As bad as it gets she said. And shes now got the awful decision of what to do.

I really only thought this test was for downs, and now i just dont know what to do for the best. Im so confused.
Any advice ladies would be so appreciated.

I was like you with my first and thought knowing would make no difference to my decision to keep the baby so why bother? On the day though, the midwife spoke to us and said that it wasn't really about that but making sure you had all the facts and that if something did show making sure that you could prepare in advance for the needs of your child and prepare for any feelings you might have before the baby arrived. Really, it can't be a bad thing to have all the facts you can. Very personal decision but just my view

All i can give you was what we decided to do. We had the test, and before had we agreed that anything that affects the quality of life, we can deal with, anything that meant no quality of life, none at all, we would abort. So something like downs, okay, something like no idea if this is a true example a hole in.. Something that meant he would only live for a few hours? Not okay..

But it's your decision, entirely, so discuss it with your dp and your mw (although I think mws will always advise to have it done) but she may be able to tell you what the tests are for..

My advice is more relevant to the 20week scan but I think the same ideas apply... A lot of people seem not to have it/ask for no details as they would still have the baby anyway, whatever the problem. If we had said this, our baby's heart problem would have been missed at birth, he would have missed out on the vital surgery he needed when he was 12 hours old and he wouldn't be running around the house now with his toy trains. Please have everything you are offered, it's not as simple as do we/don't we. Sometimes its 'we will, but we need to put these measures in place...'

At both 12 week and 20 week scan I asked lots of questions, because both my partner and I like to know if there is any minor or major problems, so that we can prepare and deal with it as much as possible prior to birth. That's just the type of people we are. Pretty much the same reason why we wanted to know the gender, we don't deal well with surprises good or bad haha
It's such a personal decision, you and your partner need to have a chat about it. Everyone will have their own feelings on the matter, I'm sure medical professionals will encourage you do the test, purely so they can also be prepared for the birth and any required after care.

I have the view that if there was something wrong, I'd want to know, I'd want to prepare myself for anything that could happen. For example; a heart condition or something that needs imediate attention, as soon as your child was born the staff would know what exact care to give your child as quickly as possible. However that's just my personal opinion on testing, and after my son was born with heart problems (although occured after birth) it's reinforced my belief to have the testing.

It's a personal decision that only you and your DH can decide. I do suggest getting all the facts about the testing and what they include and the purpose of them before making a firm decision :)

After reading through the ladies comment, I definately believe the midwives/gp should do more to tell us exactly what the test can discover. I had my first midwives appointment last week and was asked that very question. I had eject heard of the test before, and was told it was to test for Down syndrome. I was confused and asked if many women opt to have it, they said it was personal choice and I replied that I wasn't sure whether I would want to know or not. They then told me that if I was to say no, that on the day of my 12 week scan if I change my mind I want the test, I may not be able to have it at the last moment. So to say yes was the easier option, and if I change my mind and don't want the test, apparently that will be fine. After reading these comments, if I had been told the test can tell you other possible problems, I would of without a doubt said yes. I believe you definately need to be prepared. I wish you all the best x

That was meant to say hadn't heard not eject!

Remember that when you keep a baby with additional needs, it is useful for hcp to know this from birth.
Children with downs syndrome, for example, need heart check ups and can needs help feeding at birth. Likewise obviously if there is a heart or lung issue.

It is worth testing to avoid an unforeseen emergency after birth.

It also tests for some syndromes which 100% mean, sadly, the child will die within days/hours of birth (Edwards and Pataus syndromes). Some women choose to terminate, some to keep the baby but they have time to mentally prepare for the inevitable.

The test is not just for down syndrome, it can aslo flag up other chromosomal abnormalities some of which are incompatible with life.

As others say it can also show up problems which can mean the baby can be more closely monitored and given the right support after birth or even mean you are offered a c section.

Its up to you bit I think you need to speak to your midwife so you get a bettier understanding of the tests being offered and what they may mean for you.

Good luck :)

I think a lot of people think the test is just for Downs but it's for other chromosomal abnormalities, some incompatible with life.

I guess it's a choice whether you would want to be prepared if something was found. And as others have said something could be discovered that needed specific care after birth. Although that may be more relevant to the 20 week scan (called the anomaly scan). So it's not always just a case of saying, well I wouldn't terminate. There's a lot to think about.

We had the test with our first baby and they found problems...further diagnostic testing revealed that she had a very rare chromosomal problem and we were told there was only a 40% chance she'd even survive the pregnancy. We chose to terminate and although it was horrific I can't imagine how much worse it would have been to lose her by 'surprise' later in the pregnancy or for her to be born so unwell and only survive days/weeks.

I would always say take the testing, you don't have to change your values but it helps to be informed.

I also forgot to say just like the PP above, that saying "we wouldn't terminate anyway" isn't just the case. If you didn't have the test and your baby was born with Edwards or problem that needed immediate attention after birth and it wasn't given/avaliable only to find out if you had the test they could have prepared you for the birth and your baby may have had a better chance of survival, how would you feel? It's much about you as parents and your care as well as your child's.

Sounds extreme and harsh though I'm not saying this to panic/worry you or persuade you as it's ultimately your choice but like others said speak to your MW and I can't believe I'm saying this, but, google the testing and research it :)

I am currently waiting for cvs results as they found something is not right at my scan last Tuesday I want to be prepared for every thing and be able to make the best possible decision for my baby no matter what it is .Yes the waiting for results is awful but you can do whatever is best for baby as early as possible xx

So many women do this, say "I'm not having the test because I wouldn't abort a baby with DS" like saying so is some sort of badge of honour, an indicator that you are a better person. And then close their minds and ears to any discussion.

Knowing ahead that the baby has DS or another chromosomal abnormality doesn't automatically mean that the parents wish to abort -it gives the opportunity for additional monitoring, screening and planning the birth for a baby that might struggle with a normal vaginal delivery because of heart defects for example (which may well be operable post birth).

Speak to your midwife/GP asap if you want to engage with screening now.

Unfortunately a lot of people thing 12 weeks is for DS and 20 week is for finding out the sex... they don't realise the amount of things that can be discovered in a scan and treated at birth...

A friend discovered her baby had exomphalos / Omphalocele and he was treated as soon as he was born and he is now a perfectly healthy and active 2.5 yo...

without the scans she wouldn't have seen this

During my last pregnancy, I went for a 12 week scan, laid down on the bed, she scanned by belly and 10 seconds later said, I'm so sorry but your baby has a brain deformation incompatible with life.

I had no choice wether I wanted to know that or not, she just said it! Like PP I had a termination as I would either have lost the baby to stillbirth or they would have died within 24 hours of being born. If I had chosen to carry on, they needed to make plans for the birth if I got that far as it would not have been a normal birth iyswim?

Having all the information is useful. You don't have to act on it, it's your choice, but your baby could need urgent medical care at birth. This alone would make me want to know.

I am currently pg with baby No4 and have never had the test. When I was pg with DC's 1&2 a 12 week scan was not offered and you just had to rely on the 20 week scan with less than 4 weeks to make a decision to have a late abortion if something showed up to be seriously wrong.

I chose not to have the test as I chose to face whatever problems come to me at the time. I didn't want to be told you have a 1 in 25 chance of there being a problem and spend the whole pg worrying about what may or may not be.

I would never terminate for fetal reasons so didn't have NT screening in my first pregnancy. (In my local hospital, they only give you the risk of having a child with Down's syndrome whereas in others, you might get given risk of Edward's and Patau's.)

In my second pregnancy, I knew something was wrong and did go for NT screening. As it is, DD's nuchal fold was 11.4mm (upper limit of normal is around 2.5-3.5mm) and they would have said anyway even if we had declined screening. We declined any invasive testing as I didn't want to deal with the (albeit slightly) increased risk of a miscarriage and a termination (all credit to our doctors and midwives, even when it was very clear that DD was not going to survive, we were never pressured to change our minds), but were happy to have ongoing scanning to pick up other problems.

It became clear pretty quickly that she was very unwell and was going to die before term (as she did), but had she survived then the extra scanning would have allowed us to make the decision about whether she should have been delivered in a hospital that could do neonatal cardiac surgery (she had a chromosome problem which likely caused a very significant heart defect) or whether she should have been just for palliative care on birth, that sort of thing.

In my subsequent pregnancies, I've been looked after by Fetal Medicine and had NT screening, along with extra anomaly scans and fetal echos. I'm not sure if picking things up at 12 weeks rather than 20 weeks would made any difference to my care and I still would never terminate for fetal reasons, but it has made me feel more reassured that we were picking up anything early if things could be helped.

I would have the tests, if I were you. Just having the tests doesn't mean you have to do anything with the results if you don't want to like.

As another poster put it very well, we have always felt that we wouldn't terminate a pregnancy if it seemed likely that the baby would be born with disabilities but we probably would terminate if it seemed as if the baby would have very little quality of life.

It's such a myth that the test is only for Downs - although in some trusts it may just be done for that reason - whereas the blood tests and scans are frequently for a range of things.

I have a child with Downs, we didn't know before he was born. We were very lucky, quick delivery with just a midwife, I spotted there was something wrong, luckily no heart or feeding issues, we went home two days later. Would it have been better know? I can never answer that question, I personally am better in the eye of the storm than worrying about the storm so I just had to get on with it and cope.

A few years later, it doesn't feel like 'coping' we're just a family like any other.

In my hospital they told me that the thickness of the nuchal folds can indicate either a serious heart defect or Downs syndrome. There was an option to test for just the heart defect (which is the option we took). I think that means they only tell you if the folds are over a certain amount outside of the normal range, different to the range they use for Downs Syndrome (sorry I think that's right but am by far an expert).

When the sonographer told me that she acted like it was quite standard to measure for the heart defect even if we opted out of the Downs test. Are you able to contact your hospital to see if they did the same with you but just didn't do a very good job of communicating what happened?

Oh sorry, just noticed you haven't had your scan yet! Hopefully my last comment is of some use anyway.

"When the sonographer told me that she acted like it was quite standard to measure for the heart defect even if we opted out of the Downs test."

In my hospital, the antenatal notes have a section where you accept or decline the NT screening, but it is clear that they will tell you if they spot anything abnormal, whether or not you accept/decline formal measurement of the nuchal fold. In my case, the sonographer would have said anyway as the NT measurement was so large, but I can imagine it is more difficult to spot in borderline cases.

Either you sign beside:

Combined screening is the test I want to have: I understand this is a screening test which will calculate my risk of Down's syndrome. I am also aware that sometimes other chromosomal abnormalities are identified in this way. I understand that if combined screening is not possible for any reason I will be offered an alternative test.

or

I would like a dating scan instead of combined screening for Down's syndrome. I understand that the sonographer will inform me if she is aware of any abnormalities at this scan.

Aaaaaaah yes thanks Dino. Mine was something similar to that although there might have been something specific about measuring for a serious heart defect... Or maybe not, the sonographer might just have told me that in passing. Will look it up when I get home.