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

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

If this is your DP’s attitude, I think it tells you everything you need to know about his suitability to have a baby with.

And for the love of God, please make sure you’re financially secure, because if he walks out on you & the baby - you’re not married.

This.

Being prepared to care for your child whatever life brings is what you sign up for as a parent.

You have really crossed a line in asking a 10 year old the nature of her disability.

If you don't even accept & acknowledge that, there's no point in any posters giving you further advice.

There are no guarantees in life and your attitude & you DPs attitude towards a potentially disabled child & towards your 10 year old niece is truely shockingly awful.

How on earth can you be do self absorbed as to question this child? Fuckin hell, it's a long time once I read something so out of order.

OP I don't think YABU to want to know for IVF, however, your DS has said it's private medical information and there is not a lot you can do about that.

OP, this is said in kindness, but if you know you couldn't cope with a disabled child and your DH would leave you over it, is it the right thing to do to try and have a baby? It's one thing to find out in utero and make that decision but if a disability becomes apparent after you've given birth what would you do? You have to be prepared for anything with children, life sometimes doesn't work out the way you've planned and would your DH leave you alone? I really do think you need to consider your options here.

I stopped reading when you said you’d asked your niece. SHE IS 10.

You are aware aren’t you, that some parents don’t tell their child they are “different” and some children don’t know they are “different”.

If you were my sister and you did this I would NEVER, EVER speak to you EVER again.

Awful.

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

It sounds like neither you or your dp should have another child tbh. Your dp sounds shit.

I cant believe you asked a 10 year old child what they are diagnosed with.

I feel sorry for your neice. So how do you go about asking a 10 year old child ‘what’s wrong with you then.’ That shit sticks you know op, and you need your family because generally those comments come from horrible people through life not your own auntie. You should be your little neice’s cheerleader.

Not only can you not screen for all abnormalities in utero, you cannot prevent your child from becoming disabled as a toddler, child or teenager. You may want to reconsider if having a child is for you, there is no easy refund policy after childbirth.

I cannot imagine myself keeping this a secret either. But I would have respect for somebody else’s decision to do so. And regardless OP’s behaviour in badgering for the information and her and her partner's thinking around disabled children is dreadful.

This is sensible though @EpidermolysisBullosa. Putting aside questioning a child and a useless bloke, there's a world away a child developing an illness/disability and pre-warning relatives of a higher risk of disabilities. The latter doesn't mean you wouldn't care for a disabled child, as some people are suggesting. You're just armed with the full facts. You've put it very clearly.

What if her daughter has her disability from her father's side?

If the child is likely to die young they might want them to live a "normal" life

Yeah I don’t think that’s what she meant. Jesus h.

Jesus Christ what a massive over step from you.

Your entitlement is baffling!!! You don’t need to know this information what so ever. Doc asks if their are any genetic conditions in the family you say yes but I’m not sure what the actual diagnosis is.

As little as fifty years ago parents routinely placed disabled children in orphanages. It happened a lot - my own parents were advised to do it, but chose not to. Their lives were massively impacted as a result. Huge expense and inadequate support. Unless you have experience of what it actually involves to bring up a severely disabled child you can’t really make that statement. And you can’t blame someone for admitting they don’t think they could cope. Everyone wants a perfect child, and it’s hypocritical to pretend otherwise.

I can understand your position on this one, If I had a way to ensure that my future child had the best possible chance of being as healthy as could be then I would certainly do everything in my power to do it. That said, I don't think you are going to get any further in finding out your DN's diagnosis. I would maybe speak to my sister one last time and explain you don't need to know what the diagnosis is but just want to know if it's genetic, if the answer is yes then I would ask if she could directly converse and disclose this to IVF doctor on a confidential basis.

Honestly, it's probably quite hard for your sister to see your point of view as well, she will love her daughter immensely and although she probably wishes she didn't have to live with any adversity, I can bet if she could go back and choose a different baby excluding her daughters condition, she wouldn't. I hate to be brutal but there may also be an element from her that thinks your child will be born the way it is born just like hers and you don't get to benefit from her daughters hardships (this is just me thinking of possible reasons and I could be off the mark).

I think most parents have to give thought to the possibility of their child being born disabled in some way or another and think this is often a factor in making a decision in whether they are willing to accept the risk and progress. I have two healthy children, would quite like another but honestly, we have been mulling it over for a couple years and my main objection to going ahead keeps coming back to whether we would be able to cope with a third if child had additional needs. It is a perfectly reasonable reason to not have children if this is a no from you. I would think seriously about the risks and outcome in weighing this up OP.

I think you will find quite alot of us on the thread have this exact situation.

And telling someone who says they can't do it that they ought not to risk it if they can't is quite sensible IMO.

is It all disabilities that your husband will leave you for or just this particular one?

he doesn’t sound committed enough for you to have children with

Did you actually ask a 10 year old what her condition was? That's totally out of order.
It's understandable that you want to know and I do think it's strange your sister can't at least tell you if it's genetic.
What will you do if you have a disabled child? Not everything is detected before birth and some disabilities arrise because of birth complications.

You asked a 10 year old child with a medical condition or disability what their condition is? And she didn't seem to know what you were talking about.

Wow. That's abhorrent.

You can't risk having a disabled child and your husband would definitely leave you if you had one?

Stop the IVF and give your head a wobble about whether you are ready to become a parent. You don't get to chose a child from a catalogue you get what you are given, the positives, the negatives, the bits that make your heart sing and the heartbreaking bits that keep you up sobbing at night. THAT is parenting and you do not sound at all ready for it, or your relationship strong enough for it.

‘Dear sister. Can you tell me what condition your daughter has as I don’t want a child that’s like your girl’

😐

I really cannot comprehend anyone having ignored their sister’s wishes in this way. Approaching DS’s Ex, asking the 10 year old, and then thinking they have the right to approach the Doctor.

How awful. Also having the knowledge your DH would leave you if the baby had a disability is mind-blowing. Do not have a child with this man.

I’m stunned that you consider your behaviour acceptable.

It's as likely as not that the condition is not genetic anyway like cerebral palsy