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

You do need to know though. I’d your sister really doesn’t want the knowledge in the family can she write directly to your doctor?

Wow. It's really none of your business! You've been told no and now want to speak to her doctor? Who won't tell you anyway.

I do understand why you would want to know but I'm afraid I'm with your sister on this one.

That said, there is always a risk of having a child with a disability. Things can happen spontaneously or as a result of something going wrong with pregnancy/birth.

You asked the 10 year old?

Yes I asked my DN as my sister said it was up to DN to tell me that information

Wanting to know does not equate to needing to know. You have said yourself you want to know. Thats great and you can want all you like but they are not obligated to tell you. Thats where this one ends.

Your niece’s diagnosis is her private business. Ultimately if neither you nor DP would want to raise a disabled DC, the only option is to stay childfree. Plenty of disabilities cannot be diagnosed in utero or are acquired. There are absolutely no guarantees how your child turns out.

I think YANBU but also your sister has made this decision for the wellbeing of her DD and is also in a really hard situation. Could you ask her to just say whether there is a genetic link to the condition? Or ask her to speak in confidence with your ivf doctor on the basis that he doesn’t tell you the condition but can advise on whether genetic testing is necessary or possible?

Let it go.

It's none of your business regardless of your situation with IVF, you need to make a decision about whether or not to proceed based on the information that is within your remit.

As for this:

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

You'll have the standard ante-natal screenings but even they can't pick up everything, some disabilities don't become apparent until birth, some become apparent when a child doesn't develop in typical ways, some occur during to accidents, injuries or illnesses. If it does then you will cope because there is no other option but to do so.

She meant when your niece was an adult.
I'm shocked that you asked a child for her diagnosis.

How did you ask your niece -"hey sweetie what's wrong with you, as if I have a child like you I would abort". FFS just when you think people can't be any more disgusting.

ANY child can have a condition. If you can't deal with that possibility then don't have a baby.

You asked a 10 year old what her condition is?! Wow. It is really none of your business.

It is really not your business. It's their information to share.

You may have a disabled child, you can't eliminate that risk. You have to accept that you'll have to care for the child you'll get.

Yabu for also pestering the dn about this. You can’t find out, but also you could have a disabled child without any genetic cause.

I'm also horrified that you think you have a right to ask your niece's doctor for her private medical information.

Exactly this.

Wow! Rein it in and just check your boundaries.

This is a child with some additional needs, you’ve been clearly told that they don’t want to discuss it, that it’s personal. It’s obvious from that that it’s a difficult issue. I really can’t believe that you went to your niece and asked her.

Just back off.

Everyone is entitled to privacy.

any pregnancy runs the risk of the child being born disabled, any of us can become disabled during life. That is a risk you have to be willing to take.

You WANT to know, you don't NEED to know.

How are you going to "mitigate" for it?

At the very most you could ask your sister if it is a genetic condition. That is it, tops.

If you can't accept that that you might have a child with a disability and that you will have standard screening available then don't have a child.

And OP, any baby can be born with a condition which causes a disability.

You can't screen out all risks.

How do you think your niece felt when you asked her what was wrong with her?

It's not your business and quite frankly I don't think you should proceed with having a child if you or your dp cannot accept that they may have a disability. Babies can be born with congenital disabilities that are first in the family, they can develop medical conditions that result in disability and they can get sick ... if you can't cope then don't have a child.

I have a dd with mild (from want of a better description) disability and my dsd is profoundly disabled, this was not genetic. Love for your child needs to be unconditional not based on them being perfect.

Really inappropriate. There’s always a risk of disability in babies even if it isn’t hereditary. Not your place to ask the child at all.

Ffs you sound obsessed it is none of your business

Maybe think seriously if you want to go ahead with any pregnancy ….there will always be a risk