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Genetic Decisions - ethical issue

(8 Posts)
Newbiewife Thu 25-Apr-19 15:47:45

I carry a hereditary genetic issue meaning if i have a child it has a 25% chance of having issues and a 50% chance of carrying the genetic issue like i do and passing it on to future kids.

We get 1 round of IVF on the NHS but literally one egg. I've lost weight and took up a healthy lifestyle and the doctors advised i am in perfect health and age to go for IVF but the chances are still only 30% of a pregnancy.

Our other option is to get pregnant naturally and they can do a test very early to see if the baby is affected and we can terminate if it is. This is very early and can be done with tablets.

Obviously our first option was adoption but we weren't approved for this due to some issues in DH childhood (not his fault in any way), this also means we cannot foster which is heartbreaking.

Basically we are stuck with what to do, try naturally or go for IVF.

My husband is very supportive and we both want a child and want to go about it the best way possible. He is also as torn on the decision and we want to get some other points of view.

Polly99 Thu 25-Apr-19 16:01:20

If the genetic condition is that serious that you would terminate and if IVF is recommended so that you can try for a child without that condition (ie using PGS) then why wouldn’t you do that?
I suspect getting pregnant knowing there was a material chance you’d terminate, having an amnio or CVS, waiting for the results and then terminating afterwards (I’d guess later than 12 weeks along - unless some other test exists for his condition that can be done even earlier) would be emotionally difficult for me, particularly if the technology exists to avoid all of that.

If you have the IVF and PGS you might end up with some frozen embryos. You’d presumably have to pay to have them implanted but the cost is lower than a full round of IVF. I’d do that, even if financially it would be difficult.

Newbiewife Thu 25-Apr-19 16:13:48

Polly

Thanks for the response the testing is simply to find out if the babies sex is male or female. Males are the affected but only 50% of the time if that makes sense. This can be done through my blood quiet early.

The issue is that less than 20 people have this condition in the world, it doesn't even have a name it's so rare. All of those 20 people are completely different some are barely effected and some are severely autistic, wheel chair bound with muscle issues etc.

I think we are struggling to accept IVF as we were all for adoption and not messing with nature, like if i wasn't meant to have children of my own we could at least help a child who is already here but being rejected based on something that we have no control over and honestly would not effect our ability to parent is hard to swallow.

You're right though if you look at it based on facts its worth going through with the IVF even if it doesn't work at least we tried. I will ask about the frozen embryos, thanks.

It's just a lot to put my body through for 30% chance, i guess if we are the 30% it would be very worth it.

Knittedfairies Thu 25-Apr-19 16:35:35

I have a genetic issue with odds the same as yours: 1 in 4 chance of a significant disability, 1 in 2 chance of carrying the defective gene. We only discovered this due to advances made in genetic testing years after the births of our children. One child has a disability, one carries the gene. I occasionally wonder what I would have done in your position, and I honestly don't know. My daughter has chosen not to have children.
I'm so sorry for your dilemma; a hard choice for you💐

Keyboard91 Thu 25-Apr-19 18:06:14

I have a 50% chance of passing on my genetic neuromuscular disability - it’s a rather rare condition like yours. I’ve taken the decision to conceive naturally - most likely any affected child will be able to live a fairly normal life for at least 40 years. Advances happen all the time and newer treatments may also be approved etc. I can’t afford IVF so it’s not an option for us (if it was I would have to consider whether it was something we’d do).

It’s a very personal decision- have you had access to genetic counselling? Xx

Keyboard91 Thu 25-Apr-19 18:06:51

*for at least 40 years with monitoring, medication and interventions

averythinline Thu 25-Apr-19 18:15:55

I'm not sure its an either or decision...
you could try IVF and if successful great....you may also have more embryo's for more attempts ....
If none of these are successful then try naturally...
IVF is not 'easy' but it is nothing in comparison to looking after a very disabled child or possibly multiple terminations if you decide to do that with subsequent testing....
If you are at optimum for IVF success now then it would seem that order is more logical..however you could say try natural for a year and if it didnt work out then try IVF...

I was for completely natural process but it didnt work out like that ivf pregnancy (successful great) planned comletely natural birth/hypnobirthing etc etc ....ended up with massively medical everything and the most scanned insides in London....and a c section and Special care after birth and operations etc.....

So I would not get caught up in the planning and your ideal way and just get on with it!....best of luck ..

Jellyfloodagain Thu 25-Apr-19 18:21:14

I would go for the IVF and then take it from there.

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