Advice on whether to opt for screening/testing

[SecretlyobsessedbyLego]

I'm pregnant with our 2nd baby. It's early days as I'm Only 5 weeks, but me and my husband have talked about whether to opt for screening test this time. We chose not to with our first and he's happy and healthy. I was just wondering if anyone else has had the dilemma of choosing whether to opt for screening on various genetic things. I know if we did have a child with some genetic issues we would really struggle with our first child being perfectly ok, but part of me feels guilty about considering to do testing as I know if it came back with something bad we would have to make a pretty huge decision.

Congrats on the pregnancy. It's a really tough decision to make and only you and your hubby/partner can make that decision. We chose to as we wanted to know what our chances were. To be honest because the hospital ended up messing up our dates (4 times we had to go back) it was a very very stressful experience for us and at times we even thought we wouldn't have it done but I'm glad we did in the end xxxx

I think you need to think through to the end point - what will you do if it's 'bad' news? Would you terminate for a less than "perfect" baby? What's your cut off? Downs? Cleft lip? Club foot? Spina bifida?

For what's its worth DS1 was perfect, DS2 has Down's syndrome. We love them both and coped and continue to cope, indeed thrive, because or despite his diagnosis.

Hi Bustherb
I know realistically we'd like to know, it's the aftermath of bad news that scares me. That hospital experience sounds like a nightmare! As if you weren't stressed enough! How far gone are you? When do they do testing?

We didn't have the screening this time around (dc2) as I did not want to be faced with making some huge decisions based upon a risk ratio. I also would not terminate for DS, but was reassured by the midwife that if anything came up on the scans that suggested the baby would be incompatible with life then I would have to be informed.

Wipsglitter I don't know and I worry my husband may think differently to what I think. Part of me thinks Id rather not know and we just figure out and unexpected situations but then the other half of me worries we simply will struggle to cope. Did you opt for testing or not?

We didn't have testing. I live in northern Ireland and termination is illegal here anyway.

I dont think this is only about deciding whether to terminate.

Testing migh be helpful in case there are some issues, like heart issues etc which require surgery or some special treatment right after birth. They might have surgeons on standby or you can decide to give birth in hospital which specializes on care your baby might need.

Secretly - we ended up having 4 12 week scans because they said I was too early for the scan, then there wasn't anyone there to conduct the scan, then we were too late and then I made a big fuss about it to my midwife who spoke to someone senior at the hospital and I was transferred to another hospital who had a very experienced sonographer there who measured me within date so I had the testing done. Even after all of the stress I still don't regret having it done. I think if bad news came back I would have paid for the harmony testing. My results came back as 1 in 10,000. I'm now 20 weeks xxx

I think you need to decide if you would terminate, and for what, then this will give you an answer to whether or not to have testing.

Fwiw, I would have terminated for chromosomal abnormalities so made sure I had the harmony test at the earliest opportunity. This would have meant that, had the news been bad, I would have had a full range of options available to me to choose from.

Everyone's different though, you and your DH need to decide on this together.

Me and my OH opted for screening. We discussed it a lot and decided that even if there was a high risk of downs or some other issue, we would continue with the pregnancy, we would just rather be able to prepare ourselves a bit better. As it turns out my risk of downs is less than 1 in 28,000.

I think it depends on a) whether you feel you need to know so you can plan / feel informed and b) what you do with that information.

I struggled to conceive and had every test under the sun initially, including a lot of genetic testing for stuff like cystic fibrosis, risk of miscarriage, heart defects, clotting issues etc. I found out I was positive as a cystic fibrosis carrier, and positive for thrombophilia (causes clotting and therefore increases risk of miscarriage) In some ways knowing is good as you can be armed with info and they can treat (for my thrombophilia) but in other ways it's just jacked up the anxiety levels for me massively. Also didn't help that there was absolutely zero sensitivity and follow up on the results, and I was told over the phone by the clinic staff (not a nurse) with no further background info. It wasn't a good week until I got on Dr google.

For the remainder of the testing, we've decided to have it as this pregnancy goes on. We're going for the Harmony test in 2 weeks, as it's important for us to find out as quickly as possible whether there are any issues with chromosomal abnormalities as we have made a choice that we will terminate if so.

A lot of it is personal choice and what you think the paths might be if x/y/z happens. Me and the OH have had LOTS of discussions about 'what ifs' and our views on pregnancy and any issues and how we'd deal with them right from when we started to ttc. It was really important to us that we knew where each other stood and that we were on the same page

As Zahrah said it's not just about terminating, it's about whether you want to know if something is wrong that would need immediate treatment after birth and being prepared.

'Screening' typically refers to checking for chromosomal abnormalities though, which cannot be treated.

Routine anomaly checks for structural problems are a different thing. Which did you mean OP? Or are you thinking of just declining all scans and blood tests completely?

I am pro-screening because I think that if my baby was going to have a very short and painful life I would seriously have to think about whether to continue with my pregnancy. But even if I was absolutely 100% against termination for any reason, I would still be pro-screening because, as others have said, it's about being prepared.

I've never had testing/screening for either of my pregnancies, got 2 healthy dd and currently 17+1 with ds. The reason being I wouldn't terminate regardless. it just isn't for me, tho my friend wanted to know and openly admitted she would terminate. I respect everyone's individual decision, if you know you wouldn't terminate, is it worth putting yourself through the stress and worry?
Hope you and hubby can work out what's best for you x

Thanks for all the advice.
I was thinking for the chromosome abnormalities type screening. I'm 29 so probably not yet at a 'at risk' age but I do feel with our first being fine part of me would like the reassurance that number 2 would live a healthy life too. I don't personally agree with terminations unless there's a medical reason (just my opinion) so am in agreement with Lorelai way of thinking I think.
Need to discuss with OH properly to see what he feels on the subject like misssmilla1 talked about.

Ps Bustherb that hospital/scan experience sounds awful, as if you weren't stressedenough!!