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

The lengths you're going to invade someone's privacy is baffling to me. I understand you feel like you need this information. Sister's obviously chosen not to share that information with you or your parents (which I find odd in itself, as it could potentially benefit you all in knowing information that will help with understanding DN).

But you need to stop. It's intrusive. Genetic or not, there's always a risk when it comes to pregnancies. And that's a risk you take when you agree to have babies. Baby might be fine, or baby might have something. Take a genetic test, testing for things that can be inherited? (Don't know the name for it) That's probably your only other option.

You asked your 10 year old niece what was 'wrong' with her because you don't want a child if its going to be 'wrong' like she is? This has got to be a very sick joke.

Yeah I actually can't believe you thought this was appropriate to do OP. What were you thinking? She's a child. Sister likely meant you could ask her when she's older. She likely doesn't know herself, and you've created a mess.

I don't think you have behaved perfectly here OP and you have had a harsh response on here but, to my thinking, the blame lies with your sister.
Who would refuse to share potentially important information with a family member when it is relevant?
Who suggests her child knows or should share this?
Who would watch her sister struggle like this and not reassure her?
I would view this as extremely toxic behaviour and suggest you start to distance yourself. Book whatever tests you need and leave her out of it

Have you considered genetic profiling for yourself and your husband to see if you have any condition causing recessive genes?

Oftentimes both parents need to carry a gene to pass it on to offspring. Your niece's condition may have nothing to do with your genetics

Who would refuse to share potentially important information with a family member when it is relevant? Who suggests her child knows or should share this? Who would watch her sister struggle like this and not reassure her

Guessing that this is not the first time OP has displayed appalling behaviour that lacks in self-awareness, is hurtful to others and crosses boundaries. So, likely the ‘who would refuse’ angle may be answered by someone who has potentially put up with such longstanding behaviours from their sister, realised the toxicity, and has drawn a line in the sand and made firm boundaries to escape the toxicity that was already there? Who knows?

You actually asked a child this?!
Really?!

l am ‘allowed’ my outrage? Or do you need a full list of disabilities, for my outrage to be acceptable. MN really should have let everyone know that they were meant to pass all their information onto you so you could decide whether we could have an opinion or not.

This really is unnecessarily nasty. This poster has shared her experience and pov from having passed on a genetic condition to her child which could also be the cause of substantial disability for her grandchildren. That’s huge. You say you have disability in your family and that your DP is disabled. I empathise, but with respect, it’s not the same thing. This poster has unwittingly passing on a disability to her own child, and now faces difficult conversations about grandchildren. You’ve kind of proved her point with that horrible and uncalled for comment.

I’m substantially disabled myself, stemming from a genetic condition which can range from mild to devastating. While I think the OP is wrong to have gone about things in the way she has, l can understand her reasons and for the life of me I can’t understand why her sister has chosen this course of action - the fact that OP asked the child herself is awful, but an indication of her desperation.

And l agree with this poster. If you have a disability yourself, it does give you a degree of insight into whether people are posting from experience of disability or not. Especially the ones telling OP to mind her own business and shut the fuck up !

I’m pretty sure your sister meant it was up to your niece to tell you when she understands properly and is an adult

not at ten years old ffs

I cannot believe you asked a 10 year old. I also can’t believe you asked your sister for the doctors name to go snooping

its none of your business.

plus there are other genetic diseases that your niece doesn’t have that you could carry. It’s always a risk. You can’t screen everything and if you are not prepared to accept small risks then I think you need to consider your options going forward

You sound like an awful person op. It's absolutely none of your business. To your your sister her ex and your neice is disgusting. I think you should stay child free. It's the only way to guarantee no additional needs. Also you sound very selfish.

Why are you reaching ? There’s no indication that OP is anything like this. Many posters are missing the fact that her consultant has suggested she find out what the condition is so that OP can be tested as soon as possible. That’s enough to freak anyone out - especially if they’re actively trying to conceive.

For the sister to then refuse to share the information would be devastating, and if OP has actually stooped so low as to ask the child herself, it’s an indication of how desperate she is, not how toxic she’s been in the past.

OP l’d ask MN to pull this thread. You won’t get sound advice here because the subject is too emotive for posters to let you or anyone else contributing have an opinion that doesn’t gel with their own.

Not the same thing as what? My ds being disabled? As I posted? or did you miss that. Again, would you like me to go into detail about my Dads health and my health? Shall we go into how dad didn’t have diagnosis until I was an adult? And had ds. Or that Dp won’t have children of his own due to his genetic condition?

You are doing exactly that same. Assuming from a few lines YOU know peoples situations and deciding wether you think they have a right to have an opinion, based on those few lines.

I haven’t proved her point about a conversation about grandchildren at all. My point hasn’t nothing to do with her conversation about grandchildren that will happen in her own family. Her son will know all about his condition so it’s not even relevant to the Op.

That poster worked on the assumption that no one who thought the Ops actions are awful has been in this position. Neither that poster OR you know what any position. You did exactly the same.

You want people to give their full family history so you can judge whether their opinion is worthy or not. No one has to give you that. And it’s really ‘unnecessarily nasty’ to write people’s opinions off because they haven’t give YOU enough detail about their private lives. It’s ’unnecessarily Nasty’ to make assumptions that people don’t agree with you couldn’t possibly be in the same position.

No, she hasn’t. Don’t be ridiculous. She simply wants to know the condition so she can be screened for it herself before she conceives. She may have gone about it in totally the wrong way but to imply this is what she thinks about her niece says more about you than it does OP.

Yes, profuse apologies. I missed that your DS is disabled. But on everything else we will have to agree to disagree. Your comment was awful and amounted to a personal attack on that poster for expressing an opinion coming from a personal point of view. It’s a public forum. No one is ‘writing off’ anyone else’s’ opinion. Just expressing an opinion that if you’re disabled yourself it gives a bit more insight into those maybe posting from personal experience of disability. As an example, quite a few of my close circle have disabilities, and l know for a fact that in this situation not one of them would tell OP to ‘mind her own business and shut the fuck up.’ Apologies again for any offence caused by my oversight.

This I'm afraid..your consultant sounds like they are really overselling what they can do in terms of mitigating risk.there is only so much that they can test for. Many other conditions may arise. But all of this is very unlikely. Just go ahead with the IVF, let this go and hope for the best.

The poster didn’t talk about posters telling the op to shut the fuck up. That poster referred to anyone who was outraged at the ops actions.

There was a presumption that anyone outraged at Ops actions couldn’t have possibly be in that position. Like we are the borg. We all think the same because we are in similar positions. That’s offensive for a start. That poster attempted to invalidate the opinion of anyone disagreeing with them.

As did you. And you did it because you still thought I didn’t give enough information or the correct level of Information. You did exactly the same. You got more information action, didn’t read it properly and still assumed it wasn’t the same.

It wasn’t a personal attack. It was a point that no one has to give any poster detailed information about their family, medical history or children’s medical history to have a valid opinion.

Neither you or your boyfriend could handle a child with sn's,

Please don't have a child. It would be unfair on them.

Also leave your ds and dn alone. You are being very inappropriate.

The ‘shut the fuck up’ poster was upthread somewhere - l was speaking generally to make the point. If you go back and read the quote trail, the poster at whom you launched your attack was making a reasonable and valid observation in reply to another disabled posters’ similar observation, and you appear to have taken them very personally. You seem very triggered by the subject matter, especially in regard to the opinions of disabled people with whom you clearly don’t agree - which is fine, it’s a public forum and that’s the nature of debate. But that doesn’t make them any less valid or give you the right to launch such a vitriolic attack, reaching to find intentions that are just not there, and making accusations of invalidating the opinions of others, whilst doing the same thing yourself. Not engaging any further with this. It’s pointless and derailing.

I can understand why you want to know and also, to an extent, why your sister doesn't want to tell you the child's condition. Could she not just tell you if if it's a genetic illness on your family's side? If it's not, then you would feel reassured for your IVF treatment. If it is a genetic condition then I think your sister is being very unreasonable not telling you.

Do not have children if neither of you could cope with a child with disabilities.

This.

You want a guarantee, there are none.

I can not believe you asked your 10 year old niece.

You're missing the bigger picture here OP.

You're planning to have a baby with a man, in the full knowledge that he would leave if the child had a disability? are you mad?

Anything could happen and to be quite Frank you're going through IVF so obviously really want this child. The fact you won't want it if they're disabled when born suggests that actually you're not ready for a child at all! What exactly will you do if they're born disabled then OP? This is partly why I don't agree with IVF anyway tbh, people think they can pick and choose. Natural selection comes to mind...

What’s really offensive is you likening disabled people to ‘The Borg’. You clearly haven’t understood what these posters were saying. It was a simple observation that someone with a disability may possibly have more insight into whether posters were commenting from experience or not. If you’re not disabled yourself you probably won’t understand that point of view - there’s a certain level of empathy for the plight of others - a ‘fellow feeling’ that comes from the familiarity of similar experience. Although the circumstances may not always be the same, the appreciation of the physical, emotional and psychological effects are. Maybe it wasn’t expressed in the best way, but it’s valid nonetheless.

‘Picking and choosing’? OP is trying to have the best chance of having a healthy child without a disability. There is a certain amount of screening available to that end. She may not have gone about it in the right way, but she’s being honest with herself in that she couldn’t cope with a disabled child and is doing her best to ensure that doesn’t happen. Everyone wants a perfect baby - hypocritical to suggest otherwise and l’d be interested to know how many of OP’s more sanctimonious critics have been through screening themselves. Her partner is the red flag here. If he’d walk after the birth of a child with a disability l have no idea why she’s even considering having kids with him.

@Rosscameasdoody As previous pp's have also stated, you cannot guarantee having a healthy child, problems from birth, accidents or illnesses in childhood etc though can you. Therefore if you're unable to cope with these possibilities you shouldn't have children. Both of them are red flags not just the father.