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 are your partner can pay for genetic screening of yourselves.

@lifebeginsaftercoffee I was thinking the same thing…….

But it's not always about "coping with a child with disabiliy". I've got a serious illness (chronic, genetic, hidden until me) which massively hinders my life. Let me be clear - I do not blame my parents. But I also would not have a child because I would not want them to have a life like mine. It would be too gruelling for them. This isn't about me, it's about them.

I think it’s unlikely that’s what’s happening.

There are very few conditions that would impact a cousin in this way. If it was directly inherited by a single gene, the dsis would have been told about this at diagnosis and given advice about the impact on family members.

What’s happening here is that the op is observing ‘something wrong’ with her DN and coming to the conclusion that there could be a genetic issue.

The overwhelming question that cries out to me from your post is, why are you trying so hard to have a child with a man who has already told you he will leave you alone to raise HIS child if it dares to be handicapped? You yourself say you couldn't cope with that.

Your hounding of your sister and your niece also sounds insensitive.

It all sounds like a very bad idea to me.

OP you are never going to have the certainty you are looking for. You are placing all your anxiety about having a child on to you sister and niece, which is wholly unfair. I'm surprised your sister hasn't lost it with you to be honest.

Your child could become disabled or ill at anytime during their life. If your anxiety about coping is that overwhelming, then you need to think very carefully about going ahead. Especially with a man who has made it very clear he would leave if the going got tough. I can guarantee that doesn't just apply to having a disabled child.

Judging by what you have shared on here I can totally see why your sister has such firm boundaries about this information .

You have seriously crossed a few lines and whilst i appreciate your worries you have been really inappropriate

ALL pregnancies carry risk and all children can have disabilities.

I had easy pregnancies and deliveries and there are no genetic issues but 2/3 of my kids have mod- severe physical and cognitive disabilities which will worsen with time. Neither of them were predicted or expected. That’s life.

You seem to think that ruling out Dan's condition will make sure you don't have a child with SN. It's not how it works, has your geneticist not explained it to you?

Also, not all disabilities are generic. They also can be cause during traumatic births or even later in life (illness, accident).

You need to stop harassing your sister and niece.

It could be her lifespan is expected to be shorter but they don't know how short but want her to live life not expecting to die any time soon. Something like that. Or simply, it's the kids choice to share or not share.

This with bells on.

Honestly OP you don't sound like a realistic or even suitable person to have a baby.

Neither does your husband. He's actually saying he'd abandon you and the child if the child had a disability.

That's what you need to be obsessing about. Not your niece's diagnosis.

Do you think parents of children with disabilities put in a request for their children to have a disability? We just don’t get to chose these things, we accept that we are being blessed with a child and take whoever arrives and love them to same.
as for not being able to cope with a child with a disability- I am sorry to hear this and I think it would be best for you not to have children in this case.
I do think it is unusual that your sister hasn’t shared her child’s diagnosis but she’s made her views clear and you are overstepping.

Has op asked her sister if the nieces condition is genetic? Given the op has asked a ten year old for her diagnosis I don’t think I’d be speaking to my sister if she did the same!!. And as for asking your Nieces dr, why?

Do you not think your niece is allowed confidentiality and they tell all about her medical history? I think you need a long hard think about having a child, you don’t want a disabled kid as you won’t cope? Well newsflash you would have no choice like the rest of us with kids with disabilities not found antenatally and not to mention your ‘delightful’ dh who would leave you, what a peach!!!!!

Completely agree with this, BUT that is not what OP has said:

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

Feels very much about her, not about the potential child!

are you sure you want to go ahead, particularly with your DH attitude

Maybe she disagrees with the idea of terminating a child for disabilities

In which case tough. That's her choice not to be involved in that.

i agree

YABU, I’m shocked you asked a child. If you do not want a child with a disability, don’t try and get pregnant.

you also need to stop harassing DS. The length you went through to find out the diagnosis is really crossing a line. And your DH sounds like an utter arsehole. Why would anyone want to have a child with such a lowlife!

are you having genetic testing before going ahead?

If your DH has told you he would leave you and the baby if the baby was disabled, how on earth can you still want to have a baby with him?

Don't have a baby.

You're with someone who will leave if the baby has any kind of disability. My dd became disabled at 11, would he leave after 11 years of parenting? What would you do in that instance?

You have absolutely no concept of boundries either, your sister has made her stance clear, and you're still looking for ways to get the information she doesn't want you to have.

Maybe get a hamster or something, since you want perfection and your 'dp' will clearly leave at the drop of a hat, they aren't as big of a commitment as a baby.

Does anyone else in your family or your sister's ex's family have a similar condition or other disabilities? That would suggest your niece's disability is genetic, either from her maternal or paternal side. However, older parents are at a higher risk of having a child with SEN so depending on how old you and DH are then that's a risk too.

I agree, I think it's really weird that you wouldn't share that possibility with your family. Of course it might not be a genetic issue but I still think it's odd. I know, for example, a family where the BRCA gene was not spoken about with catastrophic results for others unknowingly affected. In my own family, on both sides, there is a strong presence of Autism and other ND conditions. I have discussed with both of my children that it is very likely any children they have will also be affected. I wouldn't have asked a child but I think this whole thing is really strange.