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

Did you say "What's wrong with you?" to your niece? Or "What condition do you have?"

I can't believe anyone would do this to a child. You must have known your sister meant that it was info for DS to share in the future if she chose to.

Can you ask your sister to at least tell you if it's a condition caused by a chromosomal abnormality, if it tends to run in families and if there's any history of it on her Dad's dad's side?

Im not convinced having a child is the right thing for you, or your other half, based on what you've said. Firstly that you couldn't cope with a disabled child, secondly that you seem to have accepted if you have a disabled child your partner would walk away, and thirdly that you thought it acceptable to ask a 10 year old child what was wrong with her.

You may have a perfectly healthy baby then something could happen that causes disability. Amputation after meningitis or an accident. A head injury that causes brain damage or they could be diagnosed with ASD or ADHD which can impact on behaviour and general mental health.

Oh god, I cannot believe you asked your 10 y/o niece what her diagnosis is.

It is a little strange that your sister won’t tell you, tbf, but honestly you don’t have a right to know and your desperation to find out is pretty disgusting.

Even if it isn’t a genetic condition does not mean you’re guaranteed to have a child without a disability.

The fact that having a disabled child means you’d be a single parent because your partner could not cope tells me you have bigger problems.

I was thinking it was a slightly strange way for your sister to handle her child's medical condition - typically you'd discuss these things in a family.

However, seeing as you thought it was appropriate to question a 10 year old about her medical state, I can see why you weren't told anything!

YABU.

Boundaries! Learn some.

How about asking your sister if it is a genetic condition, without asking for any other details?

Failing that, you and your husband could ask for genetic screening. Without any particular reason for screening, i.e. you won't have any proof of genetic abnormalities in your family, you will probably have to pay for that yourself.

However, even if you are screened and not found to have any genetic issues, there is no guarantee whatsoever that you won't give birth to a disabled child, although of course the risk would be reduced. And, of course, any child can have an accident which might leave them disabled.

With that in mind, and what you have said about your, and your husband's, inability to cope with a disabled child, are you sure that you really want to go ahead with IVF?

I can’t believe you asked a ten your old what her condition was.

Unfortunately for you, your desire to know what the condition is doesn’t trump your niece’s right to privacy.

This, this and this !! Especially the last part!

And if it's not a wind up then maybe have a think about whether or not you should be having children anyway seeing as you cannot guarantee a non-disabled child and if you can't see how inappropriate it would be to ask a ten year old what condition she has then you clearly lack some self awareness

It's none of your business. Frustrating, yes but you have to respect your DS's wishes.
What concerns me more is yours and your DP's extreme views that you absolutely could not have a disabled child. You can't mitigate that and need to consider that any child you have could well be born disabled (or become disabled in childhood). If you absolutely couldn't cope with that, please consider your life choices.

Your DH said he couldn’t cope with a disabled child so you’d be bringing it up alone if it was disabled?

I wouldn’t be having a child with this man.

AS AN ADULT not as a 10 year old!

I suggest you rethink having a baby at all if anything less that "perfect" is unacceptable to you both

Putting aside for one minute the spectacular boundary stomping on your part.
Am I understanding correctly that you are happily planning a child with a man who has told you that if your child is disabled he will leave you?

My dd was ten when she received a (neurodevelopmental) diagnosis. We asked her whether it was ok to share with grandparents.

I genuinely thought thats what my sister meant when she said it's for DN to tell me.

I think I will go away and have a think about whether not knowing i can proceed.

I may also ask Sister to write to my consultant or ask about a genetic link, but I'm not sure she'd tell me.

Do not have children if neither of you could cope with a child with disabilities.

You can't screen for autism, you can't screen for problems during the birth that could cause a disability....you certainly can't see into the future incase your child gets sick or has an accident that leaves them with a disability.

Have you asked your sister

"Does DN have a genetic condition that I am at risk of passing on if I have DC"

That's would be the only reasonable question to have asked tbh.

I really hope this is some kind of reverse.

Wow!!

Does your sister know you asked DN about this? Did you do it openly or did you sneak off and ambush her??

You sound absolutely bat shit in your behaviour to achieve having a perfect baby but you most definitely sound so immature that I'd highly advise you never become a parent!

This! Massive red flag!

YABU, so much so.
Whatever your sisters reasons, she clearly doesn't want to disclose what the cause of her daughters difficulties are. From the response DN gave, maybe she's not even aware there is anything different about her, or hasn't been told what if there is.
Disability isn't just genetic, a baby can develop perfectly healthy, and complications during birth like cord around neck, getting stuck etc, can cause brain damage. Easily an illness or accident could cause disability any time after birth too, even if they're born healthy.

If you're this against a baby with disability then you really shouldn't be having one, it's the risk all parents take willingly to have a child, and some will lose that gamble. Maybe you'd be better throwing yourself in to being a step parent.

Another who can’t believe you asked a 10yo what was wrong with her😳. Obviously her mother meant it was her choice what to divulge when she is an adult, not as a child! Honestly, if someone did that to my child I’d go no contact pronto.

If you can’t risk a disabled child, don’t get pregnant. Disabilities are not just genetic. You can have birth injuries that result in lifelong disability to varying degrees, and lots of disabilities that can’t even be screened for as yet anyway. What if your child had an accident when young leading to disability. There is never any guarantee you are going to have a ‘perfect’ child, or that any ‘normal’ child will stay that way. So, if you can’t risk it (and to the extent of harassing a 10yo ffs) then don’t have a child. That would be for the best.