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

Is your sister prepared to tell you whether the condition is genetic or not? She might feel that that doesn't intrude on her child's privacy too much, and if it is not a genetic condition you can leave the issue alone.

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

Why are you with a man who is prepared to do this to you and his child?

That’s actually the bigger question - not how to get the info or what’s wrong with the sister in not telling . What’s wrong with the father ? (And actually OP as she’s essentially said the same as him). It’s fine to screen but the DN’s diagnosis is not needed to do that; lots of people get them. But OP needs to accept a screen is not a guarantee.

If you're worried about genetic conditions then get an ancestry DNA kit and input the data into Prometheus; far more specific than your DN's condition that may or may not be genetic, and may or may not come from your side of the family.

you realise her consultant asked for this information ?

Yes I did, thanks. But it's immaterial if a it's consultant or a dinner lady asking for the information: if, despite knowing the reason they are being asked, the DN's parents don't want to disclose their child's private medical history (that may not even be relevant to the OPs fertility journey) there is nothing the OP can do about it. Except continue to push and potentially destroy the relationship between herself and her sister.

Given the OP asked if there was 'any other way she could find out (if her niece has a genetic condition, and therefore if she might carry a genetic anomaly)', I was providing her with 'another way' she could do just that: a way that doesn't involve asking other people to break someone's confidence, or attempting to discover private medical information regarding a child, against their parent's wishes.