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

@itsgettingweird actually my son is profoundly disabled. So I do know.

It’s also the fact that OP isn’t expressing concern for the unborn child; she’s focused on the fact it wouldn’t suit her.

And to mitigate that risk to “ her” she’s prepared to ask a little girl what exactly it is that’s different about her. DN seems not to have known, so even her parents have managed to shield the little girl from the full impact of her challenges. Yet OP ploughs on in …

As a parent of disabled children I am truly shocked by your post.

Anything can happen at any stage in life. Children get meningitis, sepsis, can have non-genetic conditions that are significant. If you 'can't cope' with a disabled child I think you should have a long, hard look at what that really means because the way you view disabilities, and seem to think you can control having a disabled child, or not, is deeply problematic.

You are being massively unreasonable to ask a 10yo this! I can't believe you did that. This must be a wind-up surely. Massively overreaching boundaries.

There could be a risk of a disability for any number of reasons - and not all are picked up during pregnancy. If your DP would actually leave you alone to raise a disabled child if it happens, a) why are you still with him and b) why are you contemplating having a child with him?! He’s proven that if it gets tough (which it invariably does with pregnancy/labour/babies, he’s off. Find a better partner OP!

I just cannot do it so would choose to end a pregnancy if it was discovered during pregnancy.

I understand why she won't tell you. You're essentially asking her whether there is a chance that you would have a baby like her beloved DD, with the understanding that you would rather have no children than one like her DD. Of course that's upsetting.

Perhaps the way to ask is "does she have a genetic condition that she's inherited from our side of the family ?" But that ship has probably sailed. There is never a zero risk of a disability.

I understand but they really don't have to tell you unfortunately

Most single-gene disorders are recessive. That means that even if DN got one of the genes from your sister, and you are also a carrier, then it's most unlikely that your child would manifest the disorder, unless perhaps you're married to a relative.

If it's not a single-gene disorder, then it's unlikely that knowing the exact condition involved would tell you much about your child's risk (possibly increased; possibly not; unlikely to be high.

You could have tests for chromosome disorders.

So I don't think that pressing them about the exact condition would give you enough information to be worth the distress it may cause them.

It should be remembered that you can never guarantee that any child will not be born with a disability. If this would be the end of the world for you, it may sadly be best to reconsider IVF.

I think it depends on the disability. Some disabilities are a lot harder to cope with than others I would assume and therefore being armed with this knowledge would be helpful.

You are mad to proceed with this man to have a baby. You are also mad asking your niece that question. You need to accept no as the answer to getting this personal information from your sister. If you can’t handle a disabled child, I agree with others who say don’t get pregnant. I don’t know anything about you health wise but even in good health, I know where I gave birth, they automatically treat ivf pregnancies as higher risk, a disability as others have said can occur simply from you being ill in pregnancy or the birth, not just a genetic condition. I really do think you owe you sister an apology and I would be very thankful if she accepts it. It’s the way you did it was so bad, not the being concerned.

I feel sorry for you. I think it's awful that your sister is withholding the info that she has. If it doesn't affect you she could just say that to stop you worrying. The fact that she hasn't means it might affect your future children or she's just nasty, making you worry for no reason.

I have a disability.

Being disabled is hard.

Whilst you can't control everything, and disabilities can go undetected or occur at any time, you're not a horrible person or wrong to say parenting a child with a disability is not for you.

If your child had an undetected disability or became disabled later in life I am sure you would make the best of it, and muddle through. Plenty of people feel like you do. That's why people test for things like Downs Syndrome during pregnancy. Some people just want to have prior knowledge before giving birth...Others can and do abort.

My mother did not parent me well. Being a disabled person without support is hard. I feel very vulnerable and stressed. I feel like you've been given a very hard time here. When people try for a baby, they are rolling the dice. I am sure most people would want to know anything that tips the odds against them having a healthy child.

I think it's selfish of your sister to withhold the information.

I feel horrific having ti say this, but my God's! With an attitude and lack of maturity, commonsense, very little intelligence, asking a 10yr old -disabled-!!! Child what's wrong with them, harassing your family for selfish reasons...I just cannot find the right word for you!

Please don't have a child. God help should they become disabled for whatever reason. You do not sound mature enough to have a child. I don't think any child would be free from some form of controlling behaviour growing up around you.

Just don't.

Wow.

Totally shameful and disgusting behaviour. You really should be embarrassed with yourself. Wtf is wrong with you!?

Considering OP asked her sister's ten year old daughter what medical condition she has, I wouldn't have thought she'll need to be the one to cut contact, to be honest.

I’m not going to be as harsh as some people have been as I understand the stress of fertility treatment. I was anxious every step of the way.

12 week scan was good

20 week scan all good

i went for a 4d scan at 30 weeks and the scan picked up heart tumours and my baby was diagnosed with a rare disease that greatly affects his life.

I couldn’t love him more. The reality is that if you are planning to get pregnant, raising a child with a disability needs to be something you are willing to do. I would have said I wouldn’t cope before having my son, but here I am, coping. If your sister doesn’t want to tell you, you need to accept that and decide if you’re ok with the risk.

If they needed to know, I would share it obviously. I don’t think op does need to know in this case though.

My dc’s needs are a bit irrelevant here but they do have a significant impact. I guess though that if anyone couldn’t be told what she needs without sharing the diagnosis then I’d share and explain why - I did tell for for example that her teachers needed to know the diagnosis.

So I think you’re right, it probably does depend on the disability but also on a lot of other factors including how the individual views disability.

A member of my family has been dismissive of my other child’s needs and if they receive a formal diagnosis I probably won’t share it.

2 Little stories
Best friend has genetic linked condition, screened for in pregnancy, son does not have it.
He does however have CP due to traumatic birth and lack of oxygen.
No genetic conditions in my family... my twins both have SEN.

If you think that your DH would genuinely leave you if you have a disabled child then he is not the person to have a child with.
Parenting children with disabilities is hard and many end up splitting so you would stand no hope.
Mali's asking your 10 year old niece that is low... grow up, respect boundaries talk to your sister like a grown up ask if it is genetic and if it is suggest she disclose direct to your doctor. I would hope she would. But she can't be forced to.

those who are saying they are okay with this...

OP has really aggressively pursued answers from all family members!

Adding up the many alarming things in the post, we have the additional info that OP interpreted her sister's remark as "ask the child".

OP, please do not have children until you understand what it means. They are humans. Actual people. Your child could be born perfectly healthy - and then anything could happen. If you are not okay with that, don't have children.

OP You are talking as if a baby is a toy you can order with different specifications. It's awful. I'm honestly stunned and I've seen everything round here!

I think it’s a bit odd that your sister won’t tell you, I would totally want to help my sister on her IVF journey and I’m sure you would be discrete. Why don’t you ask her if it’s a genetic condition and if it is would she give permission for genetics to access the information. Does she have any other children, do you have any other siblings? I would imagine it’s unlikely to be something that would be likely to affect your child and unfortunately none of us can guarantee a child won’t have a disability.

I also think that as others have said, when you have a child, you have to be prepared to deal with all eventualities. Accidents, illnesses, mental health difficulties, educational needs… nobody has a crystal ball. Having a child with someone who plans to walk away if anything less than easy happens is very unwise.

I honestly do think it’s very unlikely that there is anything about the DN’s condition that is likely to affect the dc of an aunt.

I think another poster has it right, that the OP’s attitude to disability has probably alienated her sister and made her not want to disclose the info.

There is nothing in the OP posts that suggests she'd be discreet! OP asked everyone she could ask and then asked the 10 year old herself.

Same here. Absolute madness. Poor little girl. Pure madness and selfishness.
if I was your sister I would never speak to you or let you near my child again.

Please do not ever have children. If you cannot love your own child unconditionally, then you do not deserve them.

I hope your sister has gone no-contact with you after your atrocious behaviour.

I’d assume the sister has a reason for her clear boundaries… possibly because the op has none! I find this post outrageous. On your quest for your perfect baby you’ve massively overstepped.

I stopped reading ask a ten year old, a CHILD, for their medical diagnosis.

Do not have children. Apologize to your family. Grow the fuck up.

I don't think you and your partner are ready to be parents.

Is he pressuring you for ivf? Do you think this is the reason you are behaving like this? (It's not how the majority of parents think, as you can see from the votes and your sisters responses to you)