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

launched an attack? Vitriolic? And you think I am triggered?

You seem triggered. Someone pointing out they don’t need to give private information to have an opinion and that it’s not an MN rule, isn’t launching an attack. The fact that you need to use such, incorrect, emotive and hyperbolic language to back yourself up suggests you are very emotive about this.

That poster referred to people who are outraged. Not posters who are swearing at the Op. plenty of people are outraged.

You backed up that opinion and decided you were going to try and take me to task without even reading what I wrote.

It’s offensive to suggest people can only have an opinion if they give personal information and agree with you. It’s telling people they can only have experienced something if they think one way. And you, ignored what I posted because you thought I hadn’t proved my experience enough. I had, but you didn’t bother reading it. You assumed I couldn’t possible be in a similar position and disagree.

The whole ‘I will say you attacked people and vitriolic, to try and shut you up because I was wrong’ doesn’t work here I am afraid.

But maybe I should claim you are personally attacking me and vitriolic because you don’t bother reading anything properly. And not I am not backing down you are trying to suggest I don’t have control of my emotions and am triggered. Again, incorrectly. We can all make stuff up.

Jesus wept. Another that can’t read.

My point was that disabled people are not the Borg and don’t all the same opinion. Ffs.

Which is what the poster this all started over said. That people who were outraged at the Op didn’t and definitely weren’t in the same position.

That poster decided that all people impacted by this sort of situation should think the same and have the same opinion with no room for free thought.

Agree. There are no guarantees. And there’s plenty of evidence on this thread from those who have had a disabled child that they don’t love them any less, and it’s not the end of the world. OP hasn’t even entertained that possibility because she’s too concerned about how it will affect her own life. But in doing so she’s being honest with herself. Speaking from personal experience caring for and being responsible for a child with severe disability is very difficult, to put it mildly. Screening offers an alternative if disability is present. Sometimes that alternative is recommended if the disability is very severe.

To my mind screening is important if you’re of the OP’s mindset - and even if you’re not. If nothing shows up on screening there’s a good chance everything will be fine. If something does, you can make an informed decision as to how you want to proceed, and if that decision is to proceed with the pregnancy then you can prepare to some extent. Of course there are no guarantees but some comments here seem to be criticising OP just for wanting to give herself the best chance of having the perfect baby that we all aspire to.

I read and understood perfectly thanks. That poster expressed an opinion with which you didn’t agree so you decided to take personal offence and read all kinds of hidden meanings into what she wrote. I read her post as well as the one she was replying to and it bears no relation to the accusations you made, and continue to make, in response. I attempted to clarify and explain from the pov of someone with a disability and instead of even trying to understand what l was saying you’re attacking me too.

OK then. Enjoy your Sunday.

Of course there are no guarantees but some comments here seem to be criticising OP just for wanting to give herself the best chance of having the perfect baby that we all aspire to.

That's not what she's doing though. She wants to make sure she doesn't have a baby with a disability because she won't be able to cope with it. She thinks having the embryo/foetus screened for whatever her niece has and anything else available will protect her. But a child can become disabled in many different ways that can't be predicted. So she still might have a baby that she won't be able to cope with and her husband will walk away from. That's a huge risk. More so for the poor baby who would have that for parents.

How low does your self-esteem have to be to spend thousands having a baby with a man who has openly told you that he will abandon you both if he or she is disabled?

"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'm wondering if the OP is known within her family for being insensitive and the sister doesn't want to discuss her child's diagnosis because she's been at the end of the insensitivity in the past?

Because if this statement (above) from the original post reads correctly the OP told her sister that she and her DP couldn't handle a disabled child, would abort it (or DP would walk out) and asked what diagnosis DN had because she needs to know for IVF! Sensitive? I don't think so. Has she been like that in the past? Then she makes it worse by asking for the consultant's name, then asks the ex, then asks the child!

If my DSis said, basically, 'if I found out I was carrying a child like yours I'd have an abortion' I wouldn't help her either TBH.

Obviously ending a pregnancy because the child may be disabled is a woman's choice. It's also perfectly reasonable to ask if there are any genetic things you need to be aware of in the family but...there are ways of asking and the above statement doesn't sound like a sensitive person's way of asking does it?

Plus the OP needs to think ahead. A child could get a head injury from all sorts of activities or be involved in an accident that leaves them disabled. Would her DP walk out at that stage too? And, as I said upthread, what if something happens in the birth that leaves OP disabled? What if it's OP that has an accident and is left disabled? Is he likely to leave then too? If so it'd be a new DP I'd be looking for...

Makes you wonder why he split up from his previous relationship.

“I’m not asking what it is, you clearly don’t want to share that, but is it something that can be passed on genetically and something I might need to be aware of?”

I think you’re being a bit bonkers by trying to get the doctor to tell you (they won’t, obviously) and asking your sister to write to your consultant, but your sister sounds like she’s just being plain obstructive.

@LovingPurpleBiscuits I hope you're ok.

People have reacted very strongly to this thread, understandably, but so think I understand where you're coming from and that this is partly down to poor expression.

My DSis has a severely disabled child. She is an amazing mother. No one can doubt her love for my DN or how hard she has fought to get her every advantage she can. She has an amazing DH (DN's dad) and they have weathered it all together. Both will (discreetly) admit that has they known then what they know now, they would have aborted. My DSis in particular has sacrificed her own health and a career to be the best mum she can be. Having a disabled child is incredibly hard work and discussing how you'd cope and whether you would or wouldn't have an abortion is I'd say a pretty normal conversation for couples who are planning a pregnancy. Many feel they wouldn't cope with a disabled child but decide to go ahead on the basis that the risks are (relatively) low and that an abortion is possible if they decide not to proceed with a pregnancy when there's a known issue. We all know something unforeseen may happen but hope it doesn't happen to us. And for most it doesn't. Some of these same parents go on to have disabled children and cope perfectly well and stay together. Saying "I wouldn't cope" doesn't necessarily mean an intention to leave regardless. It's usually just shorthand for thinking about the what ifs, worrying and wanting to have abortion as an option. I presume that's where you're coming from here OP and I actually think it's healthy to have these conversations - although ideally they should be before getting pregnant.

I also think that if you're going through IVF your hormones are probably all over the place and you're very emotional, which may go towards explaining some of your panic and perspective on this.

The only way to handle this in a way that gets you the answers you need without damaging your family relationships is to get private genetic testing.

Pretty much this especially the last line. If its genetic and inherited then it would be your dna. As and aside IF its genetic and If you also inherited it, you and your sister are voth fine. Which goes to show how complicated this is. Our duplication can be found by science but the science of what it means isn't yet there. Even the geneticist couldn't answer my questions.

Of course there are no guarantees but some comments here seem to be criticising OP just for wanting to give herself the best chance of having the perfect baby that we all aspire to

Speak for yourself. We don’t all aspire to ‘the perfect baby’. Some of us realise that there’s no such thing. We’re birthing human beings here, actual multi dimensional people, not perfect creations. And my children are pretty perfect, thank you, regardless of additional needs. How dare you assume that we’d prefer a different ‘perfect’ child. I’m sure you didn’t mean it to sound that way but the language here sounds like eugenics.

I think you're so blinded by your own worries that you've not realised how utterly, and I mean astoundingly intensive you've been. You haven't merely crossed boundaries, you've danced on them as they've gone whizzing past.

You've literally asked a disabled child what her disability is so you can ensure your child is aborted if it has it. You've effectively told your niece who you claim to love that is she was yours, you'd rather she die than parent her.

It's weird IMO that your sister has been so secretive, but that's her call to make and you need to respect that. Nagging her, trying to do through your parents, trying to find the doctor etc is obsessively weird and totally inappropriate.

I'm also concerned about the 'we can't have a disabled child' thing. You get the child you get. Most disabilities aren't picked up until after birth. Many don't occur until after birth or follow illness or accidents. If you really think he'd leave because your child became ill or disabled, then don't become a parent with him. If you would walk away from a child in that situation, then don't become a parent.

I think many people responding here don’t realise how vanishingly unlikely it is that the DN’s disability would impact the OP’s children, even if there were a genetic element. I can’t see where the OP says her Consultant has asked for the information, apologies if I’ve missed that. There are very few conditions in which this would be relevant to the OP’s IVF.

If you are this concerned about having a disabled child I wouldn't advise having one at all.

I think this poster has a point, OP, in that much of what you have said could have been expressed in a rather more palatable fashion, and that aspects of your position ARE quite understandable.

However, the fact you DIDN’T express them that way , and the fact even your Dsis seems to feel guarded about sharing her DD’s condition with you, suggests to me you do have form for ruthlessly pursuing your own concerns at the expense of those round you. You even mentioned the ivf was costing you which is in fact totally irrelevant to the remaining content - unless of course you meant it’s one thing to have a disabled child and another to have to PAY to get one.

FWIW, I suspect she is not sharing because she either doesn’t know ( it happens) or she knows it won’t affect you.

Only you will know how much this post was fully representative of how centrally you really do place your own concerns, but I would evaluate your feelings very honestly before proceeding because neither you nor your DH seem to have the fundamental ability to back seat 💺 your own preferences to consider a child. That’s how it comes across. Just being honest . It could be hellish for all of you - DC included.

As a disabled person

It is a total lottery as to whether your child will be physically disabled, sensory impaired or neurodiverse. If you cannot cope with this you have no business having children

Disability can come to any of us at any time.

If your bloke has said he will fuck off if your child isn’t his version of perfect then you absolutely should not have a child with him.

As a disabled person I agree in part but I do think that if screening is available it has an important part to play.

Exactly. The comments about “Your baby could have a disability anyway so you shouldn’t take any steps towards reducing the risk of a disability” are so ridiculous. The statistics tell me that few women refuse screening for Down’s syndrome, for example, and the large majority of those who get a positive result end up terminating the pregnancy.

The thing is with the op, she doesn’t need to know her niece’s diagnosis, she can have genetic testing and all the screening herself.

Can I just say that without knowing the disability it’s impossible to say that it’s vanishingly unlikely. Spina Bifida, for example, can range from mild effects to massive disability and can be screened for. If any family member has it, or there is past presence, the likelihood increases. And if a mother gives birth to her first child with the condition, the odds increase significantly that a second child will have it. The OP did say the consultant had asked for the details, it’s in an update. I think it’s really sad that OP’s sister won’t cooperate. I can’t imagine withholding this type of information for a close family member, to the point where it’s clearly causing significant distress.

Not everything is screened for though, and if the consultant has asked for the details he’s clearly concerned it’s a condition for which they don’t routinely check.

No not routinely tested for, but if it’s important then more extensive testing can be done.

Personally I have no problem with anyone knowing mine and DS diagnosis (I didn’t know I had it til’ after I had him and he turns out to have it much more severely) so if the op were my sister she would already know.