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

On the one hand, my nephew has a severe genetic condition that is pretty unpleasant. My husband and I were screened to see if we were carriers and we may have opted for an IVF route to avoid the condition if we were at risk.

On the other hand, my son has now developed epilepsy in his teens with no family history. I don’t think it’s possible to hand him back now so 🤷‍♀️🤷‍♀️

You’ve asked if it’s genetic - the answer has not been forthcoming, you are going to have to make your decision and balance the risk with what you know.

Maybe just stick with something with a bit less commitment than a whole human tbh!

Bloody hell, you overstepped the mark spectacularly there @LovingPurpleBiscuits. Surely your sister meant your niece can choose to give you that information when she’s an adult.

I had an amniocentesis test privately which tested for a lot more than the NHS did. But you will be facing a late termination.

Glad it’s not just me thinking this, that it’s something the sister feels ashamed of or responsible for, either rightly or wrongly.

I wonder if there are any MNs here who may be able to offer suggestions based on professional or/and other experience.
Perhaps a list of things you’ve noticed.
You have mentioned walking and speaking difficulties.

Then you could do some further research. It would be a terrible shame to give up on the idea of having a child when there may be no genetic link.

Hmm. I can see why you would want to know. When I was pregnant (not IVF) we were asked if there were any conditions in either family. My husband’s late uncle had severe learning disabilities and the MW told us to try and find out what it was. It was hard to find out as most family members were either dead or had dementia but we did eventually find out it was not genetic. I had all the tests etc clear for both kids but my youngest one is autistic something that wouldn’t be picked up in utero. So even knowing doesn’t mean you won’t have a disabled child. Also think of it from your sister’s perspective - you want to know so you don’t give birth to a child like hers. Surely you can see how hurtful that is?

Fetal alcohol syndrome sounds more likely than anything genetic.

It's natural to worry about it, but you should never have asked a 10 year old about their medical issues.

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

Also, what a prince among men!!
Present me with a perfect child or I will leave you to raise it alone.

If that's honestly how you feel about your dp and your relationship then please think very hard about having a baby with him.

And your sister will know the paediatrician's name as it will be on the letters they sent to her. She is choosing not to tell you unfortunately. Personally I think she should at least indicate whether it is a genetic condition or not.

So…you’re basically telling your sister if there was a risk of your baby being like her daughter, you’d abort? Jesus.

Oh dear god OP just drop it!!!! It seems highly unlikely that your DN has a genetic issue that could run in your family. How could you ever think asking a 10 year old what’s wrong with them is ok? You have likely damaged their self-esteem and mental health for life.

Please don’t do IVF, children are not perfect mini humans that look and act perfect. Being a parent is unbelievably hard even without disabilities to consider, I wonder if you’d even like a typical child on that basis alone.

I really can’t believe how selfish and unkind you have acted.

I agree

Yes it would be helpful to know. But your sister has made it beyond clear she is not going to tell you. I'd drop it before you lose dn in your life.

Utterly stupid trying to diagnose over few bits OP has given us and I wouldn't trust any professional diagnosing over the internet and same to you people saying its FAS

I mean this kindly, but if you won't cope with a disabled child, don't have kids.

Did you really ask a 10 year old what is wrong with her? What the hell...

I don’t think YABU @LovingPurpleBiscuits

All this mystery is quite weird and unnecessary. Surely knowing about a genetic condition is something anyone would feel it’s reasonable to know, if possible?

I’m really surprised by all the people saying they wouldn’t prefer to avoid having a child with a disability or medical condition if they had the option. I wonder how honest they’re being with themselves…

It's very easy to be a good person in hypothetical situations and from behind a screen...

I can't believe you asked your DN. I can't think why you thought that was a sensible or kind thing to do, or how you would phrase that in a non-offensive way.

And having a disabled child is a risk for anyone, so if you feel you couldn't cope, then you need to give this careful consideration.

I also think you need to be very careful how you manage this with DS, ie. "'can you tell me what the condition is as if my child is at risk of being like DN then we won't go ahead" which is awful!

I do appreciate wanting to know more about genetics etc as I have disabilities myself. However, I would prepare for being cut off from this side of the family the way you're approaching this.

Don't have kids. There's always a chance they could be disabled. You can't test for everything. I do think your sister should really tell you, but you should also respect her decision not to and just leave her alone now.

You and your partner might be able to have a genetic screening to look for any known issues.

As your partner has told you that if you have a child with a disability he will walk away I'd be tempted to give the IVF a miss and stay child free. Your child could be born or become disabled/have cancer.... and doesn't need a dad that will reject him/her and you would need the support too. Why have kids with someone that is literally telling you they are a fair weather dad and if the going gets tough they are off?

Of course everyone dearly hopes their child is not disabled. OP has stated her ‘D’P would leave her to raise a child alone if it is disabled. Given disability can occur after birth, it seems like a ridiculous risk to take at all.

Could you imagine? "Hi sis, can you let me know what condition your daughter has so I can check for it and abort my kid if they have the same thing?".

How disgusting, think about what you're saying about her daughter. If I had that conversation with anyone about my child I would never speak to them again.

You are vile to think your wanting to know the information trumps your niece's right to privacy.