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

And yes - what did you think would even if your sister gave you the doctor's details?! He's hardly going to tell you another patient's diagnosis is he?!

Your niece is entitled to her personal medical information remaining private. Your sister is protecting her DD's right to medical privacy. If you can't cope with a disabled DC then don't get pregnant because every pregnancy has a risk of the DC being disabled.

You asked a 10 year old for her medical diagnosis.....wow!!!!
You are so out of order!!!

What will happen if you had a child who got meningitis or had a serious accident? Would you put them into care?

I can't believe she won't tell you! That's pretty outrageous. I guess this has got mixed up with her feeling protective of her dd...the fact you would be choosing not to have a dc if they might have the same condition. Pretty shit she hasn't just been upfront about it though.

It is absolutely her business if any child of hers has a possibility of having the same condition.

If it is genetic your DS & BIL would have been tested and if the genetic consultant thought blood relatives needed to be aware then they would have encouraged them to tell you so you can be tested . As they haven’t, you can assume that you are not affected so keep out of it . They are absolutely right , it’s nothing to do with you . Leave them all alone and stop the harassment!

Please think about how your nosiness is affecting your sister - this is cringeworthy behaviour on your part & I say that as someone who underwent IVF & ICSI for many years.

Based in what has been said about your ‘d’h, if your precious and assumingly much-wanted child became sick, with limited mobility, what the hell would happen to your child?

HappyFitnessQueen I agree .I think its strange your DS wont share the information with you.I dont think theres much you can do ,but asking a little girl about her condition isnt on .Could your parents speak to her?

"Hey sis, I don't want a child like yours, can you tell me what's wrong with her". 😬

Wow - you have some bloody front.

This - dreadful.

No it isn't.

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

I think she meant for DN to tell you in her own time and only if she wants to...not you going stright out asking her, bloody hell op.

All your sister had to say doesn't appear to be a genetic link or get perhaps get tested for XXYZ in order to put your mind at ease that would basically be telling OP what the condition is and she doesn't want to do that.

Stop it! You are acting like an absolute idiot! This has to be one of the worst things that I’ve read on here (in the last 18 years!).

Came on to say exactly this. My ex BIL was in a motorbike accident a few years ago. He's gone from a successful medical professional to a very brain damaged man who needs care from his father for the rest of his life. There are no guarantees with parenting. I'd think very carefully about continuing with IVF if I were you. Everything will probably be fine but it might not be

Every pregnancy has a small chance of leading to a disabled child. But for some disorders the chance can be as high as 1 in 4. That's a huge difference.

We went for genetic counselling before trying for children.It's a long time ago now so I can't remember the details. But we were told that my cousin's child's severe disability would have no effect on any children of ours, and I still don't know their diagnosis, so I presume there was some way for the genetic counsellor to get access to their records.

No, it really isn’t.

Not to mention the OP has gone about it like a bull in a china shop.

Children don't come with a guarantee and many, many potential health conditions don't show up in genetic testing. Your statement "I also will not cope with a disabled DC" is very troubling. Your child could develop a disease, get badly injured in an accident, etc. If you're not ready to cope with whatever comes then you are not ready to be a mother.

You were totally in the wrong to ask your niece about her condition or what was wrong with her. Your sister does not want to share her daughter's medical history either.
I know a couple who had a child with a rare genetic condition which has effected them in several ways. They were told after genetic testing not to have another child because another child would be more severely affected. The couple were healthy and around 30 years of age when this happened. This child is now in their teens and it been hard for them. Along with they know their child condition is life limiting.

I have a friend who found out they were on the autism spectrum as an adult. My friend has close relative who was diagnosed as having ASD as a child. I know several couples as well that have disabled children.

I know you may want a child and your going down the IVF route to get pregnant. I don't know your age but your maybe 35 plus. If your partner/husband already has 2 children he could be older as well. I think that you should be aware that if the father is older you have a higher chance of having a child with ASD and possibly some other issues.

Unless you willing to accept having a disabled child I would not be going down the IVF route to have a child with a man who has told you he would not cope with a disabled child.
It not fair on you or a child to bring them into a situation where your going to be left dealing with this on your own if it happens.
My feeling is that he already has 2 children and due to their ages and his age he might not want another child. He may not want to tell you this but has said he would not cope with a disabled child.
Some times you have to decide if having a child is worth it in this situation. I knew woman who wanted kids but then decided not to go down the IVF route and to accept that they would be childless. They went on to have very good, happy lives.

@LovingPurpleBiscuits do you think your sister actually knows? Has DN definitely been diagnosed? Seems odd DSis wouldn't know the consultants name.

Taking aside your niece .

many, many, many physical and cognitive disabilities are not picked up through antenatal screening.

therefore you may have a disabled child.

Or your child could have an accident when young and end up disabled.

Lots of bad things can happen

You won't be able to send the child back.

If you can't cope with a child, whatever that child is like, then you shouldn't have one

Sorry @LovingPurpleBiscuits not read all the replies, but when there's a known genetic condition in the family, it is advised that relatives are told and tested.

You know your sister best, if she was told to share a risk of a condition would she do that? It sounds they were never seen by the geneticist department. She may not want more kids herself, so won't be bothered.

You are absolutely not entitled to anyone else’s medical information. My family went NC with an entire side of the family over this. They were really awful about me having a genetic disability and how I should have told them earlier etc. said it prevented someone on their side having children (completely untrue, it doesn’t even prevent me having children). Asking for “proof” as they thought my doctor had gotten it wrong 🙄 my condition made no difference to their lives - they had adult children and I was too far away from their future grandchildren genetically for it to have made a difference.

If it were something that would likely affect your child genetically, they’d probably tell you? They haven’t because, I would assume based on them being normal, decent humans, that she knew it wasn’t something your child was at risk of so you didn’t need to know.

you can ask her but if she doesn’t want to tell you then that’s her choice with her private medical information. You could end up with a disabled child no matter what, the only way you can avoid that is by remaining child free.

I wasn’t diagnosed with my disability until 19 (showed symptoms at 12+). I had a cousin diagnosed as disabled at 13. A sibling at 15. I know lots of people whose children were diagnosed aged 2-18. You do not come across well in this post but I hope that it’s because of stress and anxiety.