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

Does your sister know that you directly asked her child? That was in terrible taste.

I think that you need to talk to your h about what happens if your child has a disability that can’t be detected by blood tests or scans. Would you be able to enjoy raising your child when disabilities like neurodiversity only become clear years down the line ?

She is not going to write to your consultant.

You need to let this go.

This. Honestly also think you are not suitable to parent.

Going against the grain here. Don't think you should've asked niece but think there's expectation of knowledge. She could just tell you if it's genetic, could you ask her that? Doctors won't say anything by the way - the patient has privacy. I also think people saying "any child could have a disability": yes, fair, but if there's a genetic condition in the family that statistically impacts the odds of you having a healthy child then you might alter your decision pre-conception. It's being sensible, not callous.

If you & your DH can't cope should your child be disabled, you don't get to have children. Sorry. You can't test for everything, and people can become disable through injury/illness at any time in their life. It's not nice, but it's true! Also, WTF is wrong with your DH saying he'd leave you if your child was born disabled?! Better hope you never get struck down with anything serious, eh?

You have NO right to other people’s medical information.

Pay for your own genetic testing if you must.

Educate yourself that many conditions either do not happen due to genetics, may not be picked up on scans or may happen after birth.

After that, reassess your decision to be a parent as it doesn’t seem the right path for you.

You’re really not getting this, your desire for a child without a disability because you and your husband won’t cope with it, does not trump other people’s right to privacy.

If you can’t cope with a child with a disability don’t have a fucking child.

And you’re still asking ‘is there a way to find out?’ despite it being very clear that your DN and her parents don’t want to share the information. No, there isn’t, and the fact that you’re looking for one is appalling.

You don’t need to know. You only think you do. If it was directly inherited, there’s every chance your dsis would have said so already.

What the actual fuck?

some genetic condition ,s occur randomly my son has a rare chromosome disorder which is thought to be the underlying cause of his complex disabilities ,it was de novo even if we had been aware of it prior to birth
we would have had no.wau of knowing how it would affect him as the condition varies massively with different people.

Not the same, but I was unaware a cousin of mine had epilepsy until he was 18. His mum wanted to keep it private. Fair enough. OP, it's none of your business.

If you couldn’t cope with a disabled child, don’t have a child. Any pregnancy can lead to a disabled child, lots of disabilities aren’t genetic and can’t be tested for and disabilities can also be caused by injuries and illnesses which can sadly occur in otherwise healthy babies, toddlers or children. There is no guarantee of a healthy baby when you become pregnant and no guarantee any child won’t have a disability, whether present at birth or not. Your DN’s condition is none of your business and even if you knew her condition and knew you weren’t a carrier of it wouldn’t mean that you couldn’t have a child with a disability. If disability is not a risk you could take then bottom line is you are not in a position to have a child because it is always a risk.

You genuinely thought your sister had given you the green light to interrogate a child about her medical condition?

Words fail me.

At the very most I think you can ask if it's genetic but even then she may not tell you and is well within her rights not to.

Or perhaps explain the symptoms you know about it your DN to the consultant and they can screen for conditions linked to those symptoms if possible.

But I think you need to consider counselling as your attitude is unusual

I think you’re being treated unfairly here OP. I’d feel at you do and really want to know in advance if the condition was something possibly heritable. And yes, I’d also abort if I knew in advance that the child would have a serious disability or medical condition.

Having said this though, I’m not sure I’d have asked the ten year old herself, that wasn’t great judgement.

Against the grain here - I’m horrified your sister wouldn't tell you about possible genetic issues.

This

Have you actually asked your consultant whether you need to know this? Family history usually relates to your first degree relatives ie parents/siblings. In any case, they are keeping it private and you have to respect that

Could she write directly to your doctor?

Yabvu on lots of fronts however.

Don’t have children if you know you don’t want a disabled child. I know 2 women who had unexpected traumatic births & now have very disabled children. You can’t possibly know your DC won’t be disabled.

Why the cloak and dagger approach, I find that incredibly odd. What's so shameful about others in family knowing a diagnosis, surely it supports your neice? There can be variances in how genetic conditions present so you and others in the family need to know. Are you sure it's genetic and not related to drug use when pregnant, can't fathom this at all? Good luck with it. I'd ask around the wider family for other conditions showing up too.

Your sister is being very weird (imo) & all that secrecy does is create stigma for your DN.

You should not have asked DN, there's no way to ask it that, again, doesn't create stigma. Also - again sister is weird for not being open with her daughter.

If you truly want a baby then you accept there may be something different about that baby - it's part & parcel. I'm pro abortion but anti abortion cos the child might be inconvenient (vs profoundly & life threateningly disabled).

But! AND THIS IS THE KEY THING, your partner would leave you if your child wasn't 'perfect'? What the actual fuck! And you just accept this condition?! WHAT THE FUCK?!!

Can't believe your sister would withhold such information from you - are you both not close? Does she think it's ok for you to possibly have a child with the same condition despite her knowing she could give you a heads up!

I have 2 disabled children. None of them would have been identified prenatally. One will need lifelong 24/7 support. There is no guarantee for a healthy child. None. If a disabled child is not something you can cope with, then there is a very simple solution: do not have children.

And you'd DS is right, you have no right to know what DN condition is. Even if you knew and you could rule it out, it doesn't guarantee anything.