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

The niece is entitled to privacy for her medical information and her parents to take the view that her best interests are served by maintaining this.

It doesn't matter why the OP wants this information, she is still not entitled to anyone's personal information.

I’m kinda in the middle with this. As I do think it’s odd that she’s not willing to share the condition or even as a minimum whether this is genetic and something you should be aware of.
However I think it’s more concerning about your partners views on children with additional needs and yours to some extent. When you choose to have a baby there is always a chance that they may have some level of LD and you need to be aware of that. You cannot create or presume you will have a genetically / developmentally “perfect” child.
If this is an absolute deal breaker for you both maybe you should rethink having a child and I mean that in the nicest way.

Yes, exactly. The concern about the risk is understandable but the actions and approach to 'finding out' are beyond the pale.

I suggest you don't have children. Children can have all sorts of problems, whether or not related to your DN's condition, and if you're not prepared to take that on board then, in my opinion, you're not equipped to have children. If your DP says he would walk if the child was disabled, you should not have children with him. Neither of you seems to be prepared to take on a child, warts and all.

Finally, how dare you interrogate a 10 year old child about their medical condition, and try to circumvent your DS's wish (and right) to privacy with regard to her DC's medical condition by attempting to contact her doctor?

Don't have children.

You are so out of order for asking the child.

I can see why you want to know but honestly, that is not on.

Your partner said he’d abandon you and DC if they are disabled?! Why are you having a baby with this man??

You do know that many disabilities aren’t discovered until after birth right?

I’m in two minds about whether anyone could actually be this lacking in self awareness but this isn’t necessarily true. The DN could be using alternative communication, could have a speech issue but still be understood by people who know her etc etc.

I'm struggling to believe this is real.

You have zero right to this information. Back. Off. Everyone understands why you want to know, but that want does not outweigh your nieces's right to keep her own medical information private. Your behavior suggest she should not trust you with sensitive information as you can't seem to respect the incredibly clear and valid boundary that has been set. If you continue to persue this they would be reasonable to break contact with you.

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

This is the description of a couple who should not be having a baby together at all, honestly. Leave your sister and niece alone and focus on examining your own choice.

Could you not have genetic screening before your IVF? I do wonder about your real commitment to having a child. It sounds as if you want a perfect child but suppose your child is excessively badly behaved, isn’t as cute as other children, has ADHD or other condition unacceptable to you? You have to be in parenthood for the long haul no matter how your child happens to be.

Wow! Not all disabilities are genetic!
DN's disabilities are absolutely none of your business and if you can't cope with the thought of a child with any impairment, then think again if you want to conceive
I have Moderate Cerebral Palsy for example which is not genetic and can't be determined before birth
I function " normally enough" to have had my own 3 DC

OP, your behaviour is not right, this whole situation isn't right. Your partners comments are not right. Take a huge step back and re-evaluate.

This.

Whether your sister wants to share this information or not is nothing to do with the thread because OPs sister isn’t.

Have all the tests you want but the minute you start pushing people to give you personal information (including asking a ten year old girl what’s wrong with her) so that you can make sure you’re not going to have a child like her, you’ve crossed a line.

There is no guarantee ever that a child will be born "perfect". You can only hope for the best. So if neither of you can cope with a child with a disability, then don't risk having a child. Children deserve better than that.

Funny how it seems all the outraged people on here aren't actually disabled or curriers of genetic faults.

How do you know? In my case, at least, your assumption is wrong.

Also disabled.

And have a disabled child.

I've done 3 rounds of IVF and you can have your embryos genetically tested..why don't you know this, you can have yourself genetically screened...why don't you know this? Why ask a small child what's wrong with them?. You don't paint yourself in the best light here ...

How can you be completely sure you wouldn't have a disabled DC? Autism or deafness can't be screened for during IVF. Surely part of being a parent is being prepared that your child might have a difficulty? Are you sure you are ready to be a parent?

You shouldn’t be having a child if neither parent can ‘cope’ with a disabled child. It sounds like your niece is pretty mildly affected as well! I can’t believe you asked a 10 year old is this a wind up?

Quite frankly you’d be better off not having any. What makes you think a disabled child is any less worth having than your imagined child? Since you don’t know what your going to get, do everyone a favour and forget about it.

I don't think any of you should have children tbh. You all sound like you don't have the emotional maturity or social intelligence.

I find your post very sad. I can understand you wanting to know your DN 'condition' and if this is genetic for your IVF.
I suggest you and your DP have genetic testing. I had assumed this would have been a prerequisite.
Possibly, you have approached your sister in an inappropriate way. It doesn't sound like you or your parents have much to do with your DS and DN. Not asking for help is different from not being offered help. Maybe the child's other grandparents are more accepting and understanding. Your DP and yourself may have unconsciously let your attitudes to disabilities known.
We have an adult DC with disabilities and we found this with some members of our families. This meant we never asked for help.
We were told to put DC in care as it would affect our careers and our place in society.
Initially, there was no name just delay and not meeting milestones. No testing was done. There was a diagnosis later but again no genetic testing.

Your sister may not know a name for her DD condition. She may have been told global delay or another nondescript condition.
She may not have been offered genetic testing. She may have not taken in the information as she may have been in a state of shock or denial. Especially as the father was not with her. She has obviously just got on with it.
Your sister may feel she has caused it for any amount of reason; drinking in early pregnancy, smoking, eating soft cheese, having a fall.
If you approached your DS and DN etc 'Whats wrong with her?"
Rather than do you think we need to get genetic testing?
Maybe being told you would abort or the DP would leave if they had a child like her precious DD has upset her and she isn't thinking clearly.

If it was me I would tell you all I knew. As I would want you to have informed choice
would probably tell you to not say to your DP as he doesn't sound very pleasant.

If you were my sister I would be very concerned by your DP attitude that if your child developed a disability it was up to you to be a single mum.

Does your DP actually want another child?
Is this his way of putting you off motherhood?

I hope your sister has a change of heart and answers your question one way or another.
I hope you give her support. Being parents of a children with disabilities is hard work. Doing it as a single parent would be much more difficult.

Good luck to you, your DS and to your wonderful DN

I find it really weird that your sister wouldn’t tell you! Why would it be kept a secret like it’s something to be ashamed of. Your sister is really unfair not telling you given the reasons you want to know.

My dd was ten when diagnosed as autistic. We asked her permission before telling her grandparents, aunts and uncles. It’s the child’s information. Not something to be ashamed of but private.

What’s heartbreaking is that DN didn’t seem to know what she was talking about.

OP it’s not that I don’t get why you would like to know but you are REALLY putting yourself first in all of this - even ahead of your unborn child because you “ wouldn’t cope “ with a disabled child. The truth is that many, many parents have to. And they do. Because that’s what parents do do. It’s not even as if you phrased it as concern for your child’s quality of life.

Please reconsider begetting a child. Maybe get a handbag. Hermes will let you choose the leather, hardware etc. This will suit you better because your main concern seems to be how you will feel about the child. A parent needs to be concerned primarily for how their child will feel.