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

@itsgettingweird thats a massive assumption to make about others on the thread.

I did the same with my sister but I knew there was a 25% chance of her having a child with the same condition. The sister of the OP may know this is not the case and therefore, she has chosen to keep the details private. Perhaps if the OP has asked if the condition is likely to be hereditary, rather than asking both an ex partner and a child, she’d have got the answer.

Nope im pretty appalled at all of it tbh.
Why do people assume stuff?

You’ve clearly not read the thread. Many of us are in the same position as you. The OP’s approach is the problem, not her concerns about the risk.

Your sister is entitled to privacy. And also there are many disabling conditions that aren't diagnosed until after a birth. Also sadly children fall ill. I don't think IVF is the right thing for you taking into consideration what you have said in your post.

Absolutely this. Worrying about increased chance of disability = normal. Asking a disabled 10 year old what is wrong with her so that OP can avoid having a child like her = appalling and offensive.

How can you possibly even pretend to know who on this thread is disabled and who isn't?

I sympathise, OP. Your sister is right to prioritise her daughter’s well-being. But she is being selfish and irresponsible in keeping that important information from you. Your niece would not be harmed.

I hope she relents, at least by giving the information to your consultant in confidence.

should you be thinking about whether you want a child with your DP if he would abandon you if he/she had a disability? I mean most conditions aren’t detected during pregnancy anyway and anything could happen during a typical child’s live to cause a disability. My DC had sepsis at 11 months which has left them disabled

Is this a reverse? Surely to goodness nobody is so lacking in self awareness as this.

Stop harassing your 10 year old (!) niece and her family. It's unbelievable that you think it's appropriate to grill a disabled child about their diagnosis. Entitled doesn't cover it.

If you know that you can't cope with a disabled child, you shouldn't be having kids. Disabilities can be acquired or undetected in utero.

I am outraged at how the Op has acted. That she is contemplating having child with a man who will walk away if there’s any disability and that she questioned a 10 year old child about their private medical information.

Theres quite a few disabilities in my family, including ds. And my Dp is disabled.

I am ‘allowed’ my outrage? Or do you need a full list of disabilities, for my outrage to be acceptable.

MN really should have let everyone know that they were meant to pass all their information onto you so you could decide whether we could have an opinion or not.

This isn't how it works though. They can't/don't screen for everything.

Actually the most appalling thing about the post is an adult asking a 10 year old with disabilities what is wrong with her

I came on to say this exact thing.
No baby comes with guarantees of good health.

I don't think you're being unreasonable in wanting to know. It's for medical purposes, it's not being nosy. It's a bit strange of your sister to not share under these circumstances

This.
Absolutely terrible behaviour by you OP.
Should stay child free.

Actually the more I think about this, the more it can't be real.

You say that your niece struggles with talking and that is how you know something is wrong with her.

And yet the op asked the child, who struggles with talking, to explain about medical conditions. Clearly she wouldn't have been able to answer her anyway

Have genetic testing yourself if you really want to know if you carry a certain gene.

It sounds like you are not thinking straight with this - asking your 10yo DN is not the way forward.
Remember, even if you are genetically ‘normal’ there is still a chance that something could happen which might leave a possible baby with issues.

It doesn’t sound like your husband would be there unconditionally. Do you really want to take the chance with this man?

Everything else aside, you can pay for genetic testing to be done as part of your IVF treatment. I donated my eggs during our treatment and had full genetic screening so know that I don't carry any genetic conditions.

On the flip side, after 2 'normal' children, my youngest has Cerebral Palsy. Nothing is certain.

I think it’s none of your business I’m afraid and if you repeatedly asked me I would consider cutting you off because it’s really really disrespectful actually. When people have a baby, there are many things that can go wrong from a genetic point of view. It is a risk with every child conceived. I think that because you are undergoing IVF you have a heightened awareness of this and are looking for all the info you can get..realistically you can’t really control all outcomes. Also the genetics that count the most are you and your husband. No one else owes you any further information. Best of luck x

mind your own bloody business! You might just as easily have a child with a disability with no genetic link. Or DN’s disability might not be genetic. You don’t have a right to anyone else’s medical information for ANY reason.

If I were you OP I’d ask MN to delete this thread. I don’t think it’s particularly helpful to you because the overwhelming reaction from everyone appears to be one of horror. They’re either horrified that you are attempting to have a ‘perfect’ baby with no foreseeable disabilities or imperfections and/or horrified that you took it upon yourself to ask your Niece if she knew the name of the condition that you obviously don’t want any child of yours to have? That poor fucking child - that she has such a mercenary, unempathetic Aunty. I don’t know if that’s how you’ve always been or whether the whole IVF process has turned you into this person. If it’s the latter, maybe step back - and I’d not be attempting to have a baby with any man that’s flagging up a ‘bail-out’ clause if life gets difficult.

Sorry but my DN has several disabilities and I know everything about every single one of them. How weird is your sister being by holding onto this information. Never heard anything so ridiculous...only sharing with those who "need to know" but not your close family, especially as future generations could be impacted by this. As for you bunch of sanctimonious judgemental morality police...if someone does not wish to have a child with a known disability, they are well within their rights to say so and to take measures to prevent it. Bet a huge chunk of you had various tests done in pregnancy, checking for genetic abnormalities. This forum is bonkers.

I can’t get past that you asked a ten year old!
Just when you think you’ve heard everything, a new low.

Is it frustrating that your sister won’t tell you. Yes. Is it appropriate that your response to this is to hound her and to have a massively inappropriate conversation with a child. No. You can disagree with her boundaries about her child but that doesn’t give you permission to disrespect them and cross them.