To want to know the condition DN is diagnosed with? Is there a way to find out?

[LovingPurpleBiscuits]

Going through IVF at the moment, DP already has 2 DC from a previous relationship so it’s being funded privately and isn’t cheap.

My sister has a little girl from her marriage, now aged 10, but she is no longer with the father.

DN very obviously has some sort of condition, she struggles with talking and walking and all kinds of things I’d expect a 10 year old to do my DN can’t. But Sister has never shared her diagnosis with us, saying that it’s DNs information to give out and she only tells people who need to know. DN is lovely, polite, happy, well loved by my sister and is happy and settled at a fantastic school.

Now usually I’d respect this and not push it out of respect for my sister who will have her reasons for not telling us, but if it’s a genetic condition that I may carry the gene for my consultant would like to know so it can be tested for as early as possible, I also will not cope with a disabled DC so I want to mitigate the risk of that as much as I can – DP has said he would not cope with a disabled DC on top of his 2 already, so I’d be left to bring up a disabled child alone, I just cannot do it so would choose to end a pregnancy if it was discovered during pregnancy.

Have told Sister this and that I need to know for IVF and she just shrugged and said it wasn’t her place to tell me. I asked her Ex-Husband but he also said it’s not his place to tell me and it’s up to DN (the Ex-husband is involved with his DD, but not often so I’m not 100% certain he even knows as they split up when DN was tiny (under 2) so if DN was diagnosed it could have been after they split).

I’ve asked DN but she doesn’t seem to know what I’m talking about – so either Sister and Ex-BIL haven’t told her or for some reason DN doesn’t want me to know – I know there is definitely a condition of some sort (whether genetic or otherwise) as my sister would tell me if there wasn’t a condition to stop me asking, so there obviously is something.

My parents also don’t know and get the same answer from Sister when asked for the condition name.

I’ve asked sister for DNs doctors name but she just said she saw a general paediatrician and she can’t remember the person’s name. Is there any other way I can find out? Obviously, I know I can’t access DNs medical file, but I just want to know if theres a risk my own DC could be affected in the same way – I love DN and it would not change how I feel about her, but I also couldn’t cope with a disabled DC in the same way my sister does, she makes it look easy (which I’m sure it’s not). Sister also does it mostly alone as she won’t ask for help with DN saying DN is her responsibility – as in my parents babysit about twice a year for parents evening only, although Sister will ask her Ex-ILs more than my parents so maybe it’s just sister doesn’t want to ask my parents?

I just want to know so I can make a decision about moving forward with IVF

I'm really surprised at some of the responses here - if there was a family history of Huntington's, then it is important that @LovingPurpleBiscuits knows so she can make an informed decision.

I also don't think there's anything wrong with a person saying they wouldn't cope with a disabled child. That doesn't equate to "I'd leave if it happened" it equates to "if we're likely to have a disabled child then I would quite possibly not have a child".

I'm not sure how you can proceed OP, other than maybe asking your sister if she'll at least divulge if her daughter has a genetic condition or not, and if they know if it comes from your side of the family or her ex-husbands. I get that she wants to protect her daughter but I think this is unfair.

If you can't cope with a disabled child, do not have any children.

Whilst it would be good to know, your sister is right. It is not any of your business.

I’d be concerned with my partner saying he’d leave me to fend for myself with a disabled child. What if your baby isn’t disabled, but gets leukaemia? Will he leave at that point? What if you find out when the baby is four that they’re severely autistic? Will he leave then? What if they have an accident and need round the clock care? Then?
He doesn’t sound like the best bet, tbh.

Haven't read the full thread, but I think all these PP who say you shouldn't have asked are idiots, and probably have no first hand experience of this. I had a genetic condition as a child which can either be random bad luck or highly hereditary. I had genetic testing and counselling before I had children and while I was at it I asked about the risk profile for my brother (who doesn't have what I have) and the chances of him passing it on when he had children, and got a very helpful email from the geneticist which I forwarded on to him. Families ought to help each other out that way, not try and hide important health info from each other.

How incredibly weird of your sister. Does she often play power games like this?

OP you’re not responding to the many, many replies that have said there are multiple possible causes of disability and if you could not cope with a disabled DC then don’t have a child.

I have a child with a condition caused by a problem during the birth.

I have a friend whose child is disabled due to an infection at the age of 2.

Another with a child with a degenerative disease (not genetic) only diagnosed in primary school.

It can happen in any family, no matter what pre natal testing you have.

Your DP is not a good person to have a child with if he would leave you holding the (disabled) baby. What a prince.

Slippery slope letting other people know about medical issues. May as well put it in there that any future partner gets to know your gynaecology history after all they should know.

Whether people think sister should tell her or not. The OP has behaved disgustingly and thinks she has a right to see them, she doesn't.

There really is more to this story and I bet this isn't first time the OP has invaded her sisters privacy.

And for a few of you calling the sister vile names and such, you are calling a single mother raising a disabled child these names, frankly you are disgusting.

The problem here seems to be that both OP and her sister's way of dealing with the situation doesn't sound fully neurotypical. There is a lot of black and white thinking and inflexible boundaries that don't make much sense in the larger picture. OP seems to have convinced herself she cannot proceed with IVF unless she knows the name of a very rare condition from a child that probably only shares 25% of genetics with her.

The sister had made a valid but fairly limited rule of not disclosing something that would under normal circumstances be acceptable information within the immediate family. Sticking to a rule seems more important that what social impact that rule might have. And when she said "to ask DN herself", the OP literally went and asked a 10 year child which is bonkers on so many levels.

So the real issue here is for OP to decide whether the unusual and literal way both she and her sister deals with important decision is potentially (and far more likely) hereditary. If that were the case, would she be equipped to deal with a child who has the same issues?

Truthfully if you know fully that you and your partner would not cope with a disabled child you should just not have any. You can't screen all risks and even with screening some screened for diagnosises get missed.

I think it sounds like she is ashamed of her child.

that some parents don’t tell their child they are “different” and some children don’t know they are “different”.

So you tihnk it's kind to let them come to their own realisation when they are older children, do you? Do you not think that sudden realisation that they ARE different to others may damage their self-esteem? When other children start asking them questions and all they can do is shrug? What about when the child themselves start asking questions like "why can't I run as fast as my friends?", or "why do I have to visit the hospital so often, none of my friends do", are you as a parent going to lie to them? Whereas if it had been spoken about openly since toddlerhood, and accepted fully as the status quo, there is no dramatic realisation that they have this condition that means x, y or z.

It's not your business and quite frankly with your attitude towards having a disabled child I would suggest you don't become a parent.

Any number of things can happen during conception, and birth and you really need to be prepared for that.

Any anyway, if you are so concerned why don't you pay privately for yourself and your dh to have genetic testing.

I do think there must be more of a backstory to this. Are you quite negative about disabled people before this?

Maybe your sister has been worried about how you will treat your neice? I can’t imagine not being able to tell my sister about something like that.

Anyway, it must be hard going through ivf and i don’t want to bash on you but your neice probably needs cheerleaders op.

I think it’s good if you are honest and thinking things through about having kids, I think that’s a good thing but remember your sister probably needs kindness too.

Come on, that's not quite what she's saying. Please don't equate abortion with murder. I have said above that if she cannot cope with any disability that she should rethink TTC because who knows what can happen but saying she wants to 'kill' a disabled baby is loaded language that isn't helpful.

Maybe she has FAS and your sister is embarrassed

My sisters first was born without eyes and also has autism. By the time I was pregnant I had genetic consultation and check my baby had indeed eyes by NHS. My sister who lives abroad would have provided more information if required. I had two dc with eyes. Later my sister got pregnant again but miscarried. The fetus didn't have eyes. Different dads. So it seems my sister has some gene mutation going on.

This crossed my mind too. Or something similar.

Well, the risk is different for different people. If there is a genetic condition in the family, the risk is higher for OP so I don't blame her for wanting to know.

Exactly

I think you are being ridiculous
Although genetics have come on so much and we now know we can identify "the gene" for a number of different conditions the number that are actually inherited in a way that means your child has a significant chance of being affected, and also can be tested for in utero is still tiny.

Your future baby has a greater combined risk of any other condition than the specific condition you seem to think must be genetic that your DN has.

Your sister sounds sensible and responsible.
If you only want a “perfect” baby then perhaps don’t have one.
Lots of conditions are screened for in pregnancy, lots occur during birth/following illness or aren’t apparent until the child is older. If nobody else in your family is affected, then it’s likely that DN’s condition is not hereditary and is none of your business.

I'm trying to say this is the kindest possible way: if you know that you really can't handle having disabled children, you shouldn't have them.

Both my boys, conceived through IVF, have profound autism. Daily life is hard to extremely hard. The last few months have been hell because of extreme aggressions from one of them. The only way I'm coping is because I have daily caregivers and I have them for just 50% of the time, so I can still work full time and have some sort of life. It's still very hard.

And we've done genetic tests and didn't find anything.

My eldest daughters knows she will never have children because she can't risk having disabled ones.

But without knowing it his heritable we have no idea its a 20/25% chance.
It's far more likely DN has CP or GDD with no heritable cause. Or even if it is recessive gene its so rare as to be highly unlikely to affect OP unless her OH is DN father or another relative.

What would happen if your child had an accident and was disabled - you would have to cope.

Yes this!!!