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

Actually if my child was born into a family with such shaky boundaries and such an attitude to disabilities, I'd probably keep the diagnosis to myself as well. I don't see DSis is doing anything other than protect her child. She has been very clear on it, seemingly from early on, I'd be assuming there's a backstory there as to why she made that decision.

As for Op, life is full of risks, and giving life to a child is a massive gamble in many ways. You and DH need to be prepared for any of that, not just disabilities.

So if the condition could be genetic you will withdraw from IVF and cancel the concept of having children? Either way it's private. There is no way their doctor would tell you information about their patient. I can't believe you tried to question the kid. That is bang out of order.

You do realize that any child can be born with or develop a disability, including those born from IVF? IVF does not guarantee a non-disabled child. And IVF has an increased risk of preterm births. I sympathize with your situation and, to be honest, I would also want to know about any potential hereditary conditions. But your husband's attitude is awful. Do you really want to have a child with someone who has told you that if you had a child diagnosed with a disability he would dump you and the child? I'm not judging you - it's your husband's attitude that worries me.

Oh my god. You certainly haven't been very tactful. You're effectively telling your sister than you would rather abort/be childless than risk having a child like her DD. You've already done quite a lot by asking your sister, her ex and DN and by pushing it any further you're going to really piss your sister off. You could just ask "is there a genetic factor that might be relevant in the IVF process" but I honestly think that by asking DN and sisters ex you'll probably have pissed her off and she might be less inclined to discuss this with you.

Medical records are quite rightly confidential so you're not going to get the details from a doctor.

I'm mostly concerned that you've pretty much said DP would leave you if you had a disabled child. This would make me worry about how strong the relationship is and whether going through the stress of IVF (with this partner) is going to be the right decision, regardless of whether the baby might have a disability (many of which aren't genetic/can't be tested for or only display later in childhood). Does DP actually want another DC? Is he a good dad to his older DC? I've seen IVF wreck some pretty stable marriages and I'd be very careful before making this choice with a DP who has already indicated he might be prepared to leave you if it gets tough.

Another who can’t believe you asked a 10yo what was wrong with her😳. Obviously her mother meant it was her choice what to divulge when she is an adult, not as a child! Honestly, if someone did that to my child I’d go no contact pronto.
Id be furious if someone asked my DC. Though its not obvious and DC are all fully aware and aware its no one else's business, even my friends. Who I tell is very much is need to know basis only, not even my friends know. It's DCs' information not mine. However by this age all our DC have been in charge of who they tell, so I would mean it was their choice to devulge or not at this age now. That's fully voluntary though, not someone asking.

This reminds me of a conversation I had with my child's cleft palate nurse. She told me that some people abort when they know a child has a cleft palate, which is very easily repaired during the child's first year. Yes, there can be some additional issues and yes, it's personal choice, but I found it baffling that something that isn't life threatening etc. was a reason for abortion.

I'd suggest you and DP pay for private testing and seriously consider whether or not to to carry on with your IVF journey, considering you don't think you could cope if a child had any kind of disability.

We only know that the OP’s sister refused and says she only shares her daughter’s condition with those who need to know.

Maybe she feels her daughter should have ownership of her own condition/disability within her family context. Maybe she’s doing her best not to have her ‘othered’ or seen as defective.

Maybe she thinks, as most responders on here do, that she doesn’t want her lovely child to be ammunition in her sister’s campaign to have a child that is guaranteed ‘not disabled’ because (1) the OP doesn’t want that, (2) it would be a poor return on her expensive IVF plus (3) her husband says he’d leave her if she had a disabled baby.

This sounds like a total clusterfuck to me, and I’m not surprised the sister doesn’t want any part in the OP’s decision-making. Especially as the OP’s description of her niece is all about what she can’t do compared to ‘normal’ ten year olds.

Even at the most basic level, would you really want to deal with the narrative of your own beloved young child being the reason your sister decided not to have a child, in case it turned out defective like yours?

I’d like to think if it was generic she would find a way for the consultant at least to know. The two families I know dealing with a disabled child, the disability was caused by the birth, so there’s no way of fully mitigating against a disabled child. I guess it’s your choice whether to proceed as sounds like she’s not going to tell you

Seems like the only thing OP wants from the thread is some way to find out someone's personal medical details.

I think you are being judged harshly on here OP. It's only you want to consider all your options and IVF is a huge pressure. All your sister had to say doesn't appear to be a genetic link or get perhaps get tested for XXYZ in order to put your mind at ease.

Both parents saying it's up to DN to share implied that their daughter knew and you would expect a 10 year to have some personal medical knowledge IE using asthma pump, peanut/lactose allergies etc. So I can understand if you asked, given how the parents explained it. They should have followed with a 'And DN will be made fully aware when she is older'

Good luck OP.

Just do PGS it will
show up any issues - you don’t need to know family history as they’ll do comprehensive testing anyway

I think your sister is very wrong not to tell you.
However there could be a reason
eg it could be feotal alcohol syndrome (though that doesnt seem to get diagnosed)
Or maybe they had ivf. Dn may not even be related to you

No
Leave them alone.

If it was likely to be inheritable she would have told you.

If my sibling was having IVF and I knew there was a potential genetic condition in the family that could be tested for, I would absolutely tell them.
However, that could easily not be what's going on - there may not be an genetic element (or, no genetic element that can be tested for).

More of an issue is the fact you're just accepting that your partner will leave if your child is disabled!!! Why would you have a child with someone who will walk out?
I think it's fair enough to want to avoid disabilities - plenty of people have the NHS screening and many would act on that information and aren't viewed as horrendous individuals for that. But there's a difference between minimising the chance, and actually saying you'll walk out on your child.

When you conceive a child you are committing to care for her or him, no matter who they are. If you know you ‘can’t’ care for a child with disabilities then you shouldn’t continue with your IVF.

And don’t get me started on what kind of a ‘relationship’ you’re in where the man has already told you he will leave you and your child if the child has a disability. This is not a stable relationship and not one you should bring a child into. He has literally told you who he is.

Is this the first time you have been pushy and tested boundary's, I've got a feeling it isn't and it's something you have always done and that's why your sister keeps things from you.

Your biggest problem here isn't your sister either it's your partner who will leave you if baby is disabled, is there a list of other things he will leave you for, do not reproduce with this man.

I think that considering you thought it was appropriate to ask a disabled 10 year old child what was wrong with them that you should reconsider motherhood entirely.

That is such hugely inappropriate behaviour in an adult that you really aren't fit to raise a child.

I agree that you need to know. It's possible if it's genetic they can do tests and you can make decisions accordingly. It might be possible to select different embryos to exclude the possibility of a future child having a disease. I think your sister should certainly tell you if it's genetic or not and whether or not you should be tested for anything. I think it's selfish of her to either not say, it's not genetic - don't worry. Or if it is genetic, she needs to tell you the name of the disease. Honestly, I'd be so angry with her. For example, if I knew my child had cystic fibrosis, I would make a point to tell my immediate family and also all cousins I know about.

Would op and her partners attitude not cause concern to the IvF medics?

I'm sorry, what? Your partner would walk out on you and a newborn baby if the baby was disabled? You asked your sister's 10 year old child what health conditions they have? You'd abort a much-wanted IVF baby if they had health issues?

What the actual fuck, op? Don't have a child, that's all I can say. Fucking awful post.

Obviously nobody plans for a disabled child and nobody has said they would or did. DH and I started fertility treatment, although we didn’t get as far as screening but I don’t remember us being asked about our nieces and nephews at any point. They suggested a test for CF spontaneously, we hadn’t mentioned it. And if my husband had said he would leave me if the child arrived or became disabled, then I would have done the responsible thing and stopped the process right there and then.

And by the sounds of it OP has made some pretty concerted efforts to find out her niece’s condition. Sounds like she has asked her sister more than once, she has asked her parents, she has even asked the non involved father who she thinks could very well not even know such is the low level of his involvement. She asked the child! She has now moved onto contacting doctors and asking for letters. It is certainly sending a very big message to her sister “if my unborn baby was anything like yours I would abort it”. Even if people think they might make that decision, do you really say it to somebody with a disabled child? It’s pretty awful and I think OP’s responses show the right level of offence.

I suggest you get advice from a genetic counsellor. I’m assuming you’re considering pre-implantation genetic testing of embryos? There are limits to what can be tested for so this may be academic anyway. I’m no expert but I know from personal experience that it’s a very complex field and many conditions just aren’t that clearcut.

You could have a karyotype test done yourself which is just a simple blood test and costs about £500. This would rule out you being a carrier of any condition involving whole chromosomes either being missing or duplicated. There’s a level of testing beyond that known as whole genome sequencing which costs more like £2.5K. That wouldn’t help you though as it’s not possible to do that level of testing on an embryo.

I can see why your sister didn't tell you considering your husband and his attitude to disability.

Don't have a child. There's never a guarantee of being born without a disability plus any of us could get hit by a bus and end up with life changing injuries.

Sorry but you're sounding a bit unhinged here, asking for her doctors details? What on earth do you think her doctor is going to tell you?
So dn doesn't have a serious disability but she wouldn't be good enough for you and you'd abort ?
What happens if your baby is born with an u related disability which doesn't show up on any screenings - are you going to put it in the bin?

Totally agree. Sorry OP, I'm not sure it's a good idea to have a child if you're not prepared to care for them in the event they are disabled.

Like PP say, plenty of disabilities go undiagnosed. And then there's disabilities resulting from illness or accidents that could befall anyone at any time.