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 entitled dripping from this post! Dear God! Why assume it's genetic anyway? As for asking a 10 year old her condition, what were you thinking? You don't know how to deal with children then?
Lastly what did you hope to achieve by the name of her Dr? You as her aunt, have no bloody right to be speaking to her Dr about her health, unless you have been appointed by her parents to attend an appointment with her.

Just read that you actually asked your 10yo DN what is the cause of her disability . Im surprised your DS is still speaking to you after what you’ve done . Your behaviour is disgusting .

Imagine how hurtful what you said was for your sister. Essentially that you want to ensure you don’t have a child like hers…

I had genetic counselling after dd1 was born with a severe genetic condition that went undetected through pregnancy. After she died I wanted to know the probability of the condition recurring in a future pregnancy but I vividly remember asking the geneticist if it could also affect my DSis’s future dc. Whilst it could be inherited from us, it is more likely that it was a ‘spark’ and completely random and this could be the case with DN.

I know you are wrapped up in ivf but you will permanently affect the relationship with Dsis from your comments/ questions.

I can only really echo what so many on here have said. Everybody, that includes your niece, your sister and yourself, is entitled to medical privacy. You have no god given right to know this information whether you like it or not. Whilst it might be frustrating for you, you simply cannot behave this way. It is understandable to be concerned about your child having the same disability but your child could have another disability, or find themselves disabled in later life. What would you do then? Some things are beyond our control and this is one of them. As for asking a 10 year old child what is wrong with them when you’ve already said they have issues talking is beyond despicable.

No medical professional can give you a 100% guarantee of a baby being born in perfect health, regardless of taking advantage of all medical screenings that are available.

Any one of us, from the time of birth can be left disabled due to birth injury, accidents, illnesses like meningitis etc. You would do well to remind your DP of this - his existing DC could one day end up disabled - does that mean he would abandon them and dump them on their DM?

Both of you would do well to do some deep thinking about whether parenthood and its risks are really for you both. You could also do with some counselling as you seem obsessed and anxious with not having a disabled child to the point that it’s not healthy, and you are overstepping basic boundaries with your DSis and DN which could damage your relationship with them.

Disabilities can arise later, can be a result of a traumatic birth or can be undetected. You can’t guarantee anything.

As someone who's parent refused to give me information on a genetic condition to be petty and controlling and meant me having to have unnecessary testing which not only comes with risks but also wasted nhs money. yanbu as this is important information that in my opinion family members have a right to know however yabvu to have a child with a man who would leave you if your child is disabled. You also don't seem mature enough yourself to have a child if having a disabled child is such an issue. You do understand people can become disabled at any age. A child is a long term responsibility.

She is 10 years old. It's almost impossible for her to give free and informed consent. I understand why you want to know but dial it way back.
Even if you fins out her condition you may be pregnant and get a different condition. Just wait for the pregnancy and get tests then. Worst case scenario if the condition I discovered after birth you can give baby up for adoption as you have a strong position on this. And beware, disability can happen at any age for a range of reasons.

Asking mum, dad, 10 year old, looking up doc's name is way way too intrusive

Agree with others , shouldn’t have asked a 10 yo what their condition is. Shouldn’t have asked the ex either after your sister had told you it’s up to DN (if she wants to) share it with you.

You’ve to come with terms that you can’t control anything during pregnancy / childbirth / parenting and there will always be risks. You might have a healthy newborn who turns out to have leukemia few years after.

I actually think you have a partner problem because you’ve said is that you’d not be able to cope with a disable child when the actual reason is that your partner would break up with you and let you on your own with their child. Are you sure he’s the right man to take this risk with?

please leave your dn and anyone around her alone.

Can you not just pay for genetic testing privately for you and your partner? We did that before starting ivf, as the clinic didn’t know whether we’d need a different package to the ivf we were planning on.

Quite a pile on... I would want to know too. It's just being prepared. OP isn't saying she's going to dump the new baby down the workhouse if it isn't blonde haired and blue eyed.

Does your sister know that you directly asked her child? That was in terrible taste. Sister did leave this open by saying it’s DNs information to give out and she only tells people who need to know.

Sister is being weirdly odd about it. You are asking about genetics, for heavens sake.

Although a ten year old is ... well, only ten. The emphasis on the 10 year having the rights to share.... Well, I can only imagine your sister meant 'share when she's older'. If you asked in a 'ten year old' appropriate way, that's really not a problem bringing it up; aunties and nieces should be free to talk about 'proper stuff'.

Although yes, your DP saying he wouldn't want a disabled child... It is perhaps honest but accidents can happen, causing disability, and you'd be left alone.

I do think your sister is being unreasonable in not telling you about any possible genetic issues. But, I think you are much more unreasonable. Even leaving aside asking the child directly, which is totally out of order, you have basically told your sister that a child like hers is not good enough for you. You must see how hurtful that is, surely?

Having a genetic condition doesn’t mean it’s passed on by the parents, runs in the family etc. It could be just a random mutation. And even if it is hereditary, it might have come from the dad’s side. So just because it’s “genetic” doesn’t mean there’s any increased risk for a cousin.

I feel like that’s as much as it might be acceptable to ask - if there’s any risk to your hypothetical future children - which you absolutely don’t need any detailed diagnosis to answer. But even then you should tread very carefully. Of course it’s natural to want to reduce or at least understand risks relating to disability but her disability doesn’t make DN any less of a person and neither she nor your sister need to hear how desperate you are not to have a child like DN.

Wouldn't be caught dead trying for a baby with someone who had already threatened to leave me in the event that the child was disabled.

There are many conditions that cannot be screened for, many that are undetectable until the child is born and even many complications could happen during the birth that results in disability for the baby, or for you.

Stop harassing your sister and niece for her private medical information and start looking for an actual decent man who won't abandon you and a child the second things don't go right.

If you cannot cope with a disabled child maybe you shouldn’t be a parent . I say this the nicest possible way but my oldest was a “ normal “ child until 19 months when he suffered brain damage after an allergic reaction . My middle one has ADHD only diagnosed at 8 .
IVF specially ICSI increases the risks of a child being disabled too .
The reality is your DN and your sister owe you nothing .

Going against the grain here but I sympathise with the op. What the op describes by difficulty walking and talking at age 10 are pretty significant imo and I can understand wanting testing.

However it may not be a genetic condition and cannot be tested for. I think if it were me I would be describing the child to my doctor and asking their opinion re testing. I think that's all you can do.

If this is so important to you why don’t you go for genetic testing? Your sister clearly doesn’t want to discuss it.

If it’s a genetic condition you may carry the gene for and possibly pass onto a potential child, imo she should tell you. DS1 carries a gene which doesn’t cause any issues for his own health, but if he had a baby with someone who carries the same gene, there would be a 1:4 chance of it being fatal. Of course I have shared this with my brother so he is aware and able to have our niece tested if they choose. It is DS’s medical information, but it’s important those who could be impacted are informed.

Aside from the partner saying he would leave if the child has disabilities!!!!!

I think you are very, very unreasonable to ask a 10 year old child for details of a medical condition, and obviously the suggestion that you would need to terminate a pregnancy if your child had a similar disability would be very painful to your sister.

I do think she should tell other family members if there is a high risk that they could pass on a genetic condition to their children, but that might not be the case.

Disabilities can become obvious later, our daughter is 2.5 and has recently been diagnosed with cerebal palsy.

So you really need to consider if he is happy to leave his child for having a condition or disability, how will you cope as a lone parent if down the line they are diagnosed with something?

Your nieces parents have very good boundaries around their daughters right to privacy.

If you are worried about your own genetic makeup and the possibility of inherited conditions why don't you pay for yourself to be screened? That way you won't be invading anyone else's privacy?

can you get a full genetic screening ahead of IVF, for you and your husband? Surely that would shed light on if there's a chance of any heritable conditions?

@greyflannel xpost!

So you’re planning to have a baby with someone who freely admits that if the child were to have a disability or mental disorder, they would choose not to be involved and leave you as a single parent to deal with them on your own?

Wow.

I understand your want to screen for certain disorders but YABU to want to know about your DNs.

It may come back that neither you or DH are a carrier but the child could still end up having some sort of disability.

I would look into having a generic carrier test for a range of disorders but tbh I think it’s completely irrelevant and the bigger question you should be asking yourself is why you’re TTC with a man who is already thinking about leaving you as a single parent and you’re not even pregnant yet!