To refuse pre-implantation genetic diagnosis

[Emmon]

My husband is totally blind due to a hereditary eye condition. His father, brother and nephew are also blind. He has a 50/50 chance of passing this on to children.

We already have a toddler who has perfect vision and although he could potentially go blind in the future specialists have said it is highly likely he has not got the disorder.

Now my husband wants child number 2 although I have strong reservations about this. This does not really relate to the chance of blindness, it is more that I have bipolar and there is a 50-90% chance of a relapse. As I run 2 businesses I cannot have any maternity leave and if I was placed in a psych unit for a few months my businesses could well go down the pan.

Anyway the doctors are giving us all these possibilities which to be honest is making things worse. The first chance is testing using amniocentesis and a late stage abortion if it is +ve. The idea of this absolutely sickens me and I am disgusted the doctors are glibly offering it. I practiced as a doctor for 8 years and naively thought my job was about preserving life and alleviating suffering. The next option, which I originally thought was feasible was producing 10 embryos with IVF and then testing them and discarding the unhealthy ones. It costs £9K per cycle with a 40% chance of a pregnancy. Of the normal ones some would be frozen and one implanted. The more I consider this the more I think it has come out of the plot line from Frankenstein. I know some people dismiss these as "clumps of cells" but I am not sure I agree with that. As a disabled person myself the idea a disabled child has less right to life than a healthy one is something I am very uncomfortable with. I also have religious views but do not want to discuss then really.

The other 2 options are just conceiving a child naturally, or my preferred option, not conceiving any child whatsoever.

Please give noon-judgmental advice. I do not know what to do.

that should be non-judgemental

You don't want another baby, so don't have one.

And if you want non judgemental advice you might want to be less judgemental about doctors, as well as the people on this board who may have done things like pre-implantation screening.

You've clearly made up your mind. Anyone who can take the chance of passing on a disability to another human being when they have the chance of NOT passing it on, well...........!

You obviously do not WANT another child viz a viz "or my preferred option not conceiving any child whatsoever."

Difficult situation. Personally if you don't want another child, maybe your husband should take this into consideration.

If you had a choice, would you rather be free of your condition? Would you rather a child be free of the condition?

In your position I would (and that by no means indicates that I believe you should) have the genetic testing. All it would be doing is choosing which of my eggs and my DHs' sperm become a child. It is not 'designing' a child - you already have those genes that you would be passing on, with no alteration.

But, the risk of you relapsing with bi-polar and all the subsequent complications to your business/livelihood - I would also avoid being pregnant at all costs.

@last

how dare you...so because people have the chance of passing on a disability they should not have kids? That is absolutely disgusting! Did you not consider the fact you would pass your obnoxious and discriminatory views on to your kids?

I think YABU to say the doctors are 'glibly' mentioning possibilities like late term abortion.

Women who think they cannot cope or who feel that they want an abortion in those circumstances have the legal right to one. It is the HCPs' duty to inform them of this in a non-judgemental, candid way. They did this. You don't have to take them up on it.

However YANBU to feel that you don't want a particular test or to have a baby at all. It sounds to me like the timing is not right for you, so unless you are able to put in place a good plan to prevent a relapse (is that possible?) or you are at the age where this is realistically your last chance to have another child, then maybe leave it.

Have you considered adoption/fostering? I agree with other posters that it sounds like you don't actually want a child (or at least you don't want a baby/pregnancy).

If you don't want another child then I suggest you make your feelings clear to your DH; that is a completely separate argument to the 'screening'.

Don't let your DH bully you into having another child.

OP I think what was meant in the post which you took such offence to is that you have chance to check and screen rather than leave it to chance. Nothing wrong with that view if you ask me.

OP I don't think that's what last is saying, she's saying that if you have the chance to have a DC without the condition you should take it. Not that people with disabilities shouldn't have DC but that they should not knowingly pass on the condition when they can have a DC who doesn't have the condition.

I don't agree but I don't think what she's saying is that offensive.

@DIY
I would absolutely choose to be free of bipolar (and just for the record kobayashi I was sacked from my job as a doctor and then won a disability discrimination lawsuit so I have every reason to be judgmental about a minority of doctors who are complete assholes)
Just because I would rather not have bipolar does not mean if PIGD had existed back then I would have wanted to be screened out and would have then never existed.
My parents have very strong views on disability. They call me an embarrassment and a nutter (even though I have been relapse free for 3 years) and have even said if they could have had prenatal bipolar testing I would never existed (charming aren't they?).
The overriding thing for me is I DO NOT want to have another child. Strongly. If it was not for the bipolar I would give it another go but do not want to relapse as I have done so well of late. My first son was a massive gamble but back then I had no business so if I had got ill I would just have been admitted to a unit for a couple of months and no harm done. I have fought tooth and nail to set up and grow my businesses and it would devastate me to lose them.

Absolutely what I said revoltingpeasant - thank you.

@apple

I have ZERO chance of adopting. Even though I used to work as a junior paediatrician, people with bipolar are not "adoption material".

So Emmon - if you absolutely do not want another child, what the hell are you going on AIBU anyway. I don't understand what question you are asking, and why you are asking it.

You've made your mind up - stick with it.

Hi Emmon felt I had to reply although not sure I have an easy solution. But it doesn't seem right to be considering a pregnancy if you are not both happy with this decision? Hope I'm not being nosy but how does the blindness affect your husband? In terms of daily life, work etc I mean? What would happen if you did have a relapse - would he be able to care for the children on his own? And is your risk of relapse increased by being pregnant?

It sounds from what you say that for a number of reasons you would not be willing to have any form of "selection" process - either as a termination or pre-implantation diagnosis? I don't think you are being unreasonable refusing pre-implantation diagnosis - everyone has different views on the ethics of this. But I guess the question is - how would you feel if you had a child with the condition?

What happened with your first pregnancy? Did you have any sort of testing?

This really is a non-issue then.

You don't want to have a baby, so don't have one.

I hope you will postpone ttc as you clearly don't (right now) actually want dc2, which imo will be worse for your child's well-being than the risk of blindness. Unless pregnancy and birth would make you love the baby, as obviously many people start out not wanting an accidental pg but love their baby when it's here. It seems different to intentionally ttc when you don't want to. I think that's what you need to resolve, not the testing issue.

@revolting

I know doctors do not normally offer abortions like smarties, but on this occasion the exact words were "you are in luck, because we have isolated your husbands gene you can have testing and an abortion"

How does that make me "lucky". Does it make my potential unborn child "lucky"?

Emmon: I think 'last' was doing what you requested - giving her view.

You say you are disabled, but not in what way.

If you were placed in a pysch unit, as you say this would affect your business, but who would look after the children?

I think this is a difficult one - i know where you are coming from. Am i to assume that it is your husband's condition that is being screened for? Would you be having the IVF simply for the screening purposes? IF you were having to have the IVF anyway, I would be inclined to screen as you clearly can't have all the embryos implanted so it would make sense as out of the ten embryos only one would be a baby.

If you are against having IVF solely for the purpose of screening then don't do it - conceive naturally as the odds are going to be no different.

The big issue that jumps out here though is that you say you don't want another child? If that is the case, regardless of any disability, you should not be pressured into having one.

Oh and yes, the late stage abortion - don't even entertain it. Do not put yourself through that trauma.

No probs last :)

OP reading between the lines - is it that you don't want another child because you don't want one, but you think your DH will interpret this as you don't want to risk having a blind DC?

Is that it? That you fear hurting him?

That may be a reasonable fear but not a reasonable reason to consider having a child.

Does your dh understand your feelings? You have legitimate reasons for wanting to stick at one. Don't be rail-roaded into another pg.

OP if those were the exact words that is quite unprofessional and I hope you said so. It's one thing to say 'you're in luck, as we have isolated the gene which will allow you to make a decision' but not to assume that decision.

YANBU on that!

@once

My husband copes brilliantly with his blindness. he does not view himself as disabled and he never even thinks about it. When I first met him I thought he said this "to put on a brave face" but he isnt. He genuinely does not give a toss about it-in fact he says if a cure existed he would not take it.

If I relapsed (and the perinatal psych has put me at a 50-90% risk of this) I would be admitted to the mother and baby psych ward. Trust me I have been on psych wards before and I would genuinely rather be placed in Strangeways. I have been physically and sexually assaulted on adult psych wards and I would not put a dog in one.