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

There isn't a type of person who 'can cope' with a disabled child and then they are fairly allotted to those. They aren't special people who somehow find it easy.
If people don't want to share their medical conditions with you for whatever reason that is their right.
If you are adamant you do not want a child who is disabled, it isn't safe to have a child because that can happen for any reason.Even if you think you can test the embryos and destroy those with certain conditions. There is really no such guarantee in life, with illness and accidents. Maybe rethink the risk if you don't want what you perceive to be an unbearable burden.

Fair enough.

Can you not get yourself tested by one of the many companies offering DNA screening?

Interested to know what you'd do if your potential dc becomes disabled, either through birth injury or later in life as you say you couldn't (wouldn't want to) continue a pregnancy where disability was identified.

Also, it is the case that an IVF pregnancy in itself has a slighter higher risk of disability (even after factoring out prematurity and multiple births) but as the overall risk is still low, it should not be a worry. There are only a limited number of genetic conditions that can be tested for - i have a few friends with disabled children in which a genetic element ( of unknown type ) is suspected and they are part of international studies to try to determine if a gene can be identified but it's a long long process with no end in sight. You could ask to have all available tests done (extra cost) but these will only be for the small number of conditions that have a known gene associated with them. There is no way to totally screen out disability the way it is shown in science fiction films

I am afraid I agree with this.

No problems in pregnancy, no problems in the the birth....my son was nevertheless born with cerebal palsy due to oxygen starvation at some point and has brain damage.

My cousin had a son 4 months later and the same thing happened. Pure coincidence (we did have genetic testing). An aquaintance had a perfectly healthy child who contracted meningitis as a toddler and is now severely physically and mentally impaired.

If you really dont want to risk having a disabled child the only way you can do that is by not having a child.

So you have basically said to your sister, tell me everything about DN diagnosis so that your consultant can make sure your baby doesn’t have the same condition because you absolutely do not want a baby/child like your DN.
Wow, you sound obsessed with your IVF journey and ensuring that your consultant makes you a perfect baby (impossible to predict, doesn’t exist!!) , you’re in a dream world!!
Disgusting to keep asking your sister and DN, stop, just STOP

I think you should consider pausing the IVF and working on your relationship and yourself first. Your husband sounds like a dick and you sound like you're getting obsessive- which I do get, it's stressful and anxiety inducing trying for a baby and going through IVF ...

But you crossed a line asking DN and I genuinely feel like you should pause and work on yourself for a little bit cause that was an awful thing to do.

@clingon1012 I agree that perhaps she hasn't gone about this the right way. However, I can understand her worry so sympathise. Inheritable conditions aren't always obvious, no. We didn't know in our family until one person had it badly enough to pursue a diagnosis. Cystic Fibrosis is another case in point. I actually think its important that the OP finds out whether this is an inheritable disease or not. I would be annoyed with a relative who refused to simply confirm or deny that point.

Wow. If this is real, it is one of the worst things I have read on here. You are being very, very unreasonable OP.

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.

What a vile comment.

YTA just get a screen yourself. Surely more relevant to your situation SMH...

I think you have a complete lack of boundaries and empathy asking a 10 year old what is wrong with them- quite incredulous and for you to admit that by posting such n MN - especially after DSis and her ex would not tell you

Also....... why the HELL are you looking to havea child with a man who has made it quite clear that if things get difficult he will be off?

He has very clearly stated that he will walk away from his own child if it is disabled, that is not someone fit to be a parent! I am genuinely gobsmacked that you are considering him as the father for your child!

You've told your sister you need to know what DN has because you will abort I'd your baby does?? Wow

Oh and paying a lot of money for IVF does not mean you are more entitled. to a perfect child.

Exactly.

My ds has a dominant gene fault from me that means he has a 50% chance of having a child with the same condition. It's a degenerative condition and a cousin to MND.

I didn't know I carried the gene when I had him (there's some non penetrative with this condition) I decided not to have more children.

He's discussed with me about if he ever decides to have children what does he do and what are his options.

Funny how it seems all the outraged people on here aren't actually disabled or curriers of genetic faults.

They are outraged without actually having any full understanding of the situation, the risks and what decisions people have to face in reality.

Yes, anyone can become disabled or be born disabled.

But when you've faced disability and know there's a genetic risk of having a child with a disability it's a whole different ball game.

How do you know who's living with disability and who isn't?

You should not be contemplating having a child. You are not a person who has the qualities required of a good parent. Children can have a disability for a genetic reason and can also develop disabilities because of something that happens at birth or an accident or a health issue.

If you have a child and it develops a disability, what are you going to do? Dump him or her on the state and move on ?Your job as a parent is to do your best for your child, to love him or her unconditionally, to accept him/her for who they are and help them to live a happy, fulfilled life as much as they can, to fight for them.

Your actions are awful. You should be ashamed, asking a 10 year old disabled child what is wrong with her so that you don't risk having a child like her.

How do you know whos dealing with disability here?

Is your sister always so difficult and hard work? The doctor won’t tell you anything as legally they aren’t able to. You can have tests whilst you’re pregnant but they aren’t 100% reliable unfortunately

Shouldn't you be discussing this with your IVF provider?

Why don’t you and your husband go for pre-conception genetic tests. You can test for many risk factors this way…

Aside from the blatant ableism and naivety if you’re that bothered about the genetic side have IVF with PGS. Won’t negate all the other disabilities/health conditions that aren’t genetic but means you don’t have to invade your family members privacy

I understand your concern but you've really overstepped here and behaved really improperly in relation to your DN and those closest to her. Your worries and anxieties do not entitle you to access to her private medical information.

The reason that people are so appalled by the op is not actually about the genetic aspect.

It's because he partner has said that he will leave her if she has a disabled child. And yet she is planning on continuing with ivf to have a child with this man