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

I completely agree with you. It's one of several reasons I decided not to have DC.

EDIT: Not because DH would leave but because of the risk of disability and knowing I wouldn't cope.

i can totally understand why you’d want to know and I think it’s strange your sister won’t tell you even without your circumstances. I think it’s normal information to share with close family and friends. It’s not like she’s posting it on Facebook.

You can’t force her though so I think you’ll have to drop it.

If you’re absolutely against having a disabled child, you probably shouldn’t have a child.
There is always a risk regardless of genetics.
My son has disabilities with no family history and no risk factors.. both myself and his Dad were young and healthy etc.
You need to put this to bed or rethink your decision to start a family with your current partner if he won’t accept a child with extra needs

Oh gosh I know...I thought the same thing!!!! Especially when the little girl is apparently happy and healthy. Its not like she's living a life a misery!!

I've come down off the ceiling since my previous reply and agree your sister is being ridiculous, it is very selfish not to be open with close family thinking of having children, either to put their minds at rest, or so they can be best prepared.

My opinion of your attitude to having a disabled child, and even more so that of your "D" H, is that it absolutely stinks.

Do not have a child,
you mention twice how you could not cope with a disabled child. Not all disability will be picked up on a scan and then you’d have no choice but to cope. So if you are sure you can not cope do not have a baby.

I find the comment that you'd be left to cope with a disabled child alone a bit strange, bc your husband already has two children. Surely your husband would need to decide time to your child whether theate disabled or not, so implying he would have no involvement with a disabled child serms strange. By the time you give birth, his kids will be older anyway and in a few yrs on their way to adulthood.

Even if the condition is genetic doesn't mean any kid you have will have it of course, or it may have come from her dad's side.

You should consider adoption if this is such an issue for you.

I don't think that you should be having a baby and that's putting it mildly.

No one has any guarantee of not having a disabled child. As a parent, when you opt to have a child, you take everything that comes with it.

Your entire thread is moot, OP, because the decision has already been made for you. Your sister has said 'no'. That's the end of the matter.

I think if you aren’t prepared for there to be even a 1% chance of disability in any future children you have, you shouldn’t have children. Even without knowledge of DN’s PRIVATE medical condition (which btw No you aren’t entitled to!) there are all sorts of risks that you take when having a child, disability and medical conditions are just a small minority of those.

Exactly this. My niece is very disabled. Totally health pregnancy and it was a birth injury that led to her becoming disabled. Anything could happen. The only way to protect against it is to stay childfree.

Sorry for typos: meant to say surely your husband would have to dedicate time to your child whether disabled or not. You make it sound like he would ignore a disabled child.

Your understanding of Huntington's is completely wrong. The original poster OR her partner would have to have Huntington's themselves and their child would have 50% chance of having it. The DN could only have it if one of her parents had it, so asking her is completely out of order.

Huntington's has been hidden in families, but it is the parents who will need to take the genetic test to be sure.

I would go for genetic screening OP.

Most families that are aware of genetic problems will pass that information down the line, so perhaps your sister knows it’s not genetic. Although why she wouldn’t pass that on to you i can’t say. Is she in denial?

Im absolutely gobsmacked that you think your attitude is ok.
Tell me what you have so i can abort if mine has it?
Jesus christ seek therapy and dont get pregnant.
Any one of us could have a baby with anything. Thats the roll of the dice.
Wtf is wrong with you?

I can't believe you asked your disabled DN what her disability was after her parents told you no! Absolutley unacceptable!

Also why the hell do you want to have a child with a man who has told you he would leave you as a single Mum to a disabled child if the child was born like your "D"N, what a Prince of a man. Some disabilities are pure odds or can happen due to difficult births, why risk it with this man. If you're not married either he can literally just walk out of the door the moment things get difficult.

I don’t understand a lot of the angry posts here. Surely people screen for genetic issues every day. What are the NHS tests for? It’s not immoral

I'm sorry but if you really thought it was ok to ask disabled 10 year old you should rethink having a child. I hope dn was not upset by it. Yes your sister should be helpful and tell you but she us not going to.

I have a child with an autoimmune disease. She's not disabled per say but she goes thru a lot and u am right by her side thru this hell. It never would have been picked up on testing during pregnancy which I had.

I can understand why you want to know. It’s unusual that your sister won’t tell you, but it’s also quite odd to want to know so much that you ask a ten year old child.

You could have a disabled child anyway and need to reconcile yourself to that idea before you decide to go ahead. There is so much about your child you won’t be able to control or might not be to your liking, you need to be happy with that idea before you embark on IVF.

Not sure why you are so keen to avoid having a child you described like this...
"DN is lovely, polite, happy, well loved by my sister and is happy and settled at a fantastic school.", she sounds fab.
You have no right to ask this. Back off.

Have you considered that your niece may have inherited her condition from her absent father? You and your partner should not have children, you are not the right sort of people to have children. Your disablist remarks have made it very clear that you don't have the right personality and values to be a Parent.

From the genetics angle, even if your DN’s condition has a genetic basis (which it seems you do not know) you cannot assume the gene was inherited from your sister. The genetic information may have come from your DN’s father or been a new occurrence in your DN not inherited from either parent.

If the gene was inherited from your DSis this does not mean that you necessarily carry it. The consultant would hopefully know all of this and could factor it into the risks around IVF.

I would have said if you are that worried get your own DNA and your partners’s DNA tested for heritable conditions and factor this information into your decision making. You certainly do not have the right to approach your DN nor her doctor. Whilst I understand IVF is difficult and emotive, I am somewhat surprised you would consider this reasonable.

Oh OP - you’ve had your arse handed to you and you probably do deserve it (at least a little bit). You deserve some sympathy as well though!

I do understand why you’re worried - the thought of looking after a disabled child can be overwhelming. Your feeling that you wouldn’t be able to cope is really common - I have a disabled child and am quite frequently treated to that sort of comment by people who think they are being sympathetic. Quite frankly, if you did have a disabled child (and anybody can!) you absolutely would cope because there’s no other option. To suggest otherwise is really annoying but you’re far from the only person to say this sort of thing - don’t say it again and apologise to your sister if you have said it to her.

Your sister (and your niece) absolutely have the right to keep her condition private - it is your niece’s choice to divulge it if she wants to. Asking her what’s wrong with her is pretty deeply offensive and you should apologise - but maybe take your cue from your sister as to what (if anything) to say as she is still very young (and you are clearly very tactless).

I can completely understand wanting to know more about your risk in relation to IVF though. If you are absolutely desperate to know, apologise profusely to your sister (see above) and tell her that all you wanted to know was if there was a possibility that you could be a carrier for her condition as you want to be prepared if it’s a possibility. Do not mention your inability to cope etc etc. You don’t actually need to know what it is at this stage, just how (and if) it’s inherited. Your sister might still not tell you (as is her right, and you have been quite sh*tty to her…) - if you really can’t live with the uncertainty you may need to rethink your plans to have children.

(Just for context, I did tell my brother the condition that my dd has when he wanted to know for similar reasons - but I trust him and he’s never attempted to violate my or my DD’s privacy, so I wasn’t the slightest bit worried about telling him. Like your sister, I don’t tell many people about DDs condition but that is partly because my partner also has it (albeit in a milder form which was only diagnosed after having DD) and it never feels like my story to tell. Also tbh it’s v rare and its name is a string of random letters, so most people wouldn’t benefit from knowing.

Finally (have realised this rant is quite long!) your husband’s views are outrageous and offensive and he can do one. Do you really want to have a child with this scumbag?!

Still digesting the idea of asking the 10 year old described as being not a the stage of development expected for a 10 year old due to an unknown condition. Riight… well, if I were her mother I would be utterly livid you had the temerity to ask a preteen child something of this nature (child with learning disabilities FFS!). Your sis may have said it was up to DN to disclose, but I would assume she meant as an adult?

Regardless, you have no right to know and no route to get the info.

As previously said anyone can have a disabled child, presumably your niece’s condition was not known prior to her birth.

There is no guarantee it is genetic; even if it does happen to be a genetic condition it may have come ftom the father’s side so would not impact on your potential foetus.

If there is no family history of something the likelihood is the condition is just a random blip.

Also, please be aware not all disabilities happen before birth. Anyone can have a healthy child struck down by accident or disease at any point sadly. That’s something you have to accept as a potential parent and decide if you would be able to cope with it. Probably about the same odds of some random event as your niece having a rare genetic condition inherited from your side of the family.

TBH it does sound as if you are just super keen to find out what the big secret is and see this as your perfect justification for trying to find out any which way.

I'd seriously hold back on having a baby with DH @LovingPurpleBiscuits As others have said, a baby may not show developmental issues for some while. My friend's DS was diagnosed with autism at about three years old - I have it in the back of my mind that's a usual time for development to show traits but I'm no expert.

Our own DS was born with a heart condition. Perfectly normal (IVF) pregnancy and birth. It didn't show up until he was a few weeks old. Our family and friends and do know about it and have done since very early on as their decision (if we're not around) may save his life if he's taken unwell. But we have always asked his permission to tell people (explaining why when he was little) and it's now his decision if he mentions it and when. He's told all his school friends (again if he's unwell when he is out with them, they know what to do) - a surprising number of whom have also shared 'hidden' disabilities with the group!

My concern is your DH's attitude. If he can seriously mean he'd leave if a baby has a condition or disability even before it's conceived, what happens if you develop something or have an accident? If he can't cope with a disabled child, can he cope with a disabled adult?