To not do genetic testing

[LavenderSweetPea]

DH and I are trying for a second baby. I know there are tests you can do to show if either of you carry any genetic diseases which could be passed on to your child if you both carry the same faulty gene.

I want to do the testing, but DH isn't sure.

For context, since becoming a parent I've met a good number of parents with children with quite severe genetic conditions - some of which were randomly occurring and couldn't have been foreseen, but some where it turned out both parents carried the same faulty gene and their child has the condition. Our DS is 2 and healthy.

DH says we can't protect ourselves against everything, and I do know that, but I'd feel so guilty if my child inherited something from us when we could have tested ourselves and made an informed decision where we risked TTC again. DH also feels the tests are very expensive (about £1200) and our money would be better spent elsewhere. We earn decent salaries but a large amount does on our mortgage and childcare, but I think it would be money well spent.

YABU - What a waste of time and money don't do it
YANBU - it's sensible to do it

I would not do it (BTW your title and then your stated options for YABU / YANBU are opposite)

I think it's not unreasonable to not do it.

I would only do testing if I had a direct relative with a life limiting condition. We did karyotyping for a translocation, because DH knew he carried it but didn't have any further details and his mum no longer had the paperwork - we did then have genetic counselling to find out what it actually meant. It seems that we have a low chance of carrying a child with unbalanced translocation to term (this is the main risk of BT) but we do have a higher than usual chance of miscarriage, it seems to happen very early, around 6 weeks or before implantation, we had several before conceiving DC.

We don't know if the DC have the balanced version of the translocation, because we were not allowed to test them without having amniocentesis, which I didn't want due to the risk (and selfishly, because of the massive fucking needle - I would have had it if a scan had indicated it was a good idea, though)

TBH DS2 has ADHD and probably autism likely both inherited from me. You can't see that on any genetic test. Would it have made any difference? I don't know. I wouldn't want to be without him, he is awesome, but I won't lie it is challenging. He is likely to live independently, I don't know how I would have felt if that was not the case.

I do feel that these companies prey on people's fears and I think that is an especially shitty way to make money, so I don't like to encourage them.

We had genetic testing. It showed that I had a dodgy gene, dh had a different dodgy gene and ds4 had both dodgy genes. Our other dc weren't tested and we still don't really know what it means for them, ds4 or any of our future grandchildren.

I wish I had done a family screen for neurodiversity. And what I mean by this was open my eyes and realise that my slightly oddball family and dh's slightly oddball family were actually all ND and it would be likely that our DC would be too and that they would be hard work!

It wouldn't have put me off having DC but it could have mentally prepared me for them not sleeping through until 5 years old and having to ask them to find their shoes x 80000 in the morning.

That could generally feel worrying, but if you've a healthy 2 year old and are planning on TTC a second child with the same father, there's no definite need to worry? Unless there's something else?

@SlightlyTerrifiedButPolite thank you for sharing your experience. I'm a similar situation - our first child was conceived after a lengthy fertility journey incl pregnancy lost. It definitely rings true with me that feeling of more information being a good thing, and lacking belief that everything can go right.

I don't know what we would do if we found out we both carried the same defective gene. I just don't think it's the same when something random/unpreventable happens Vs something you could have prevented but chose not to find out, I think I'd blame myself a lot more.

We have needed to undergo genetic counselling after a cancer gene being identified in the wider family. Following this we have decided we cannot have biological children, as we cannot face the guilt of knowingly and actively risking passing that on to offspring. IVF is not for us for a number of reasons.

Hand on heart I wish we’d never known we carried this gene - we cannot do anything about it so now we just live with the burden. If we had not known about it I wouldn’t have felt guilty if children also carried it - as you can’t prevent that - but now we know how could we take that risk with their health.

I think you would be crazy to invite this guilt and turmoil into your life. I actually find the idea you’d do this so frivolously a bit offensive - which I appreciate isn’t wholly rational.

There are hundreds of reasons you could end up with a very ill or disabled child - ultimately you have to decide if you can manage that if you have a second child. You cannot safety plan for every scenario.

@AntParade You share your experience so eloquently, thank you for doing so. My heart goes out to you x

I would add to the above to avoid misinterpretation - when I say we won’t have biological children that is not because we do not want an “ill” child - in fact we are pursuing adoption and highly likely to be parenting a child with additional needs. However, there is a big difference in my opinion in doing the best you can to meet the needs of your child, and having knowingly caused that scenario for them.

Don’t be daft. Save your money.

This developing trend for screening embryos and all the screening out disabilities etc is eugenicist and gruesome.

Testing and knowing is one thing - if you then want a baby, you would be doing IVF and screening embryos to see if they carry the gene, discarding those which do.

I'm not sure how that works tbh. Is it available on the nhs? Do you have to self fund? How do you access it? Do you want to do IVF?

@LavenderSweetPeaI’m sorry you had a difficult journey and loss too ❤️‍🩹 🫂

The test takes about a month to come back. In our case if we had had a matching mutation we would have screened our frozen embryos for that specific mutation. It’s called PGT-M testing. You can’t test embryos for every specific mutation, but if you know you have one you can test for it

It’s such a personal thing. For some people knowing and waiting for test results is horrible, for others not having more certainty is horrible.

I’m not sure if you have ever done IVF but I kind of felt the same way about PGT-A testing (where they test for chromosomal abnormalities in an embryo before transferring). My friend didn’t want to do the testing before transferring the embryo to avoid heartbreak in case it wasn’t chromosomally normal. To me it was a way to avoid a worse heartbreak having had one miscarriage already, I wanted to do what I could to reduce the chance of repeating and to at least check the embryo was chromosomally normal before transferring

We were told btw the chances of us having matching mutations was 1 in 10,000. I don’t know if that helps! I still wanted to do it even with that