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

I cannot believe you asked a 10 year old "what was wrong with her"

What are you and your husband going to do if either you develop (another) disability?

You asked your ten year old niece to tell you what her condition is?

No words.

I have a genetic disability. There are no carriers of my form of the condition - you either have the dominant gene meaning you have the condition and can pass it on (1 in 2 chance per child you have) or you don't have it and therefore can't pass it on.

I have not shared this information with my wider family but this is because I'm the only person of child bearing age in the family with the condition. If it was a recessive gene and my cousins/nieces/nephews or their children were at risk of being carriers, I would absolutely be advising them of the risk.

However, if I had a family who were so negative about disability that they would quiz a small child about their diagnosis, I would be protecting any children I may have by keeping it confidential.

I have other disabilities as well and none of them could have been screened for in advance - some are neurodivergent conditions and others developed during the course of my life. Anyone can become disabled at any point in their life, whether by chance, accident or illness. Most disabilities cannot be screened for in advance. Genetic disabilities can also occur for the first time as a spontaneous mutation - my own genetic disability can occur this way although is usually inherited. The only way to guarantee you won't have a disabled child is to not have any children.

This in buckets!!

My ds has a genetic condition.

We know I carry the faulty gene.

I totally understand why you'd want to know because I decided against more children based on it.

I also shared with my family and if my siblings ever asked I'd encourage them to be tested - especially because I don't have the condition as it has a high rate of incomplete penetrance. It's unlikely they have same gene fault though as it's so very rare.

Seems very odd your sister isn't willing to share it but I can only think it is because she's a carrier and struggling with the emotional side of the fact she passed sit on. It's difficult when you don't know you have a gene fault and then have a child you give the gene fault too who is born disabled.

Exactly this. Both my children have autism. My older one has severe brain damage thanks to an appallingly mismanaged birth by the medical professionals and will never live independently.

If you cannot cope with the remote possibility of that happening then do not have children.

Pay for a genetic screen and leave them alone.

It's 100% up to them who they share that info with.

Personally I couldn't imagine keeping my child's diagnosis secret from every single person - to me that's like it's a shameful thing or a dirty secret. I couldn't imagine not telling my own sister especially if she was worried about the potential impact on her own child. OP says it's clear that DN has a disability so what difference does putting a name to it make? Mine has ASD and I told all my close family, I don't understand why you wouldn't.

Dp saying he would walk away if a child of his was disabled…. Charming man!

If it's a genetic condition then you can ask your IVF team to screen you for adverse genetic conditions - you may have dodged the bullet or it could be a recessive trait, in which case DP will need to be screened as well. It would not be unreasonable to ask your sister if DN's condition is genetic or not. She will know this and should be able to say without specifying what is wrong with the poor child.

I also don't know anyone with a disability who isn't willing to name it 🤷‍♀️

And I know lots of people as Dani's in para sport.

He'll happily tell people his condition that also causes neuromuscular problems. Also what gene he has a fault on.

His friend who was born with half an arm is happy to say he was born like that. It's not like you can ignore the fact he's missing one arm below the elbow!

Around 1/4 people have a disability. In terms of children, the latest stats show around 11% of children have a disability. Genetic or not, there is always a risk. Even if your dn condition is not genetic, or your child is born without a disability, there’s no saying they might not develop one or have a life changing accident. What will you do then?

The risk and the unknowns are a reason why some people choose not to have children, or additional children. The chances are not small so in your case if you feel so certain that you would be unable to adapt or cope, then you shouldn’t have a child.

She has no obligation to tell you, but given the circumstances I can't imagine not sharing this information with my sister. Thats a lot of anxiety she could confirm or ease if she wanted to. Are you and her close?

I don’t think you and your husband should have a child together. I don’t think I’ve ever said to someone they ought not to breed but get a cat or something, easier to put down if they’re imperfect and less likely to break up your marriage. 🤦‍♀️

It’s not a matter of ‘handling’ a disabled child’. That’s so offensive. I was born with Spina Bifida. My parents spent the first fifteen years of my life watching me have surgery after surgery to correct horrendous defects and l live with pain and substantial disability which they have supported at huge personal sacrifice.

Conditions such as mine can be detected through screening but the level of disability can’t always be predicted until later in pregnancy and sometimes it’s so severe that termination is advised. I simply cannot believe that so many of you are posting so sanctimoniously when you clearly have no idea of what’s involved. This thread is really unpleasant.

I don’t think parenthood is for you. If you gave birth to a baby with a disability that was undetected, then what? You’re husband would be gone, and you? What if the child grew up and then something was picked up? Bye bye child??

Also, how can anyone seriously think they can just write to another persons doctor and try and get info they’re not entitled to?!?!?

This is either a reverse, or you’re one of those weird entitled people that come by here far too often.

Wow you've massively overstepped!

You... asked a disabled ten year old what's wrong with her???

That's so far outside of what's ok that I don't even know where to begin with it. Does her mum know you asked her that?

You don't need to know, you want to know. Wanting to know is understandable but doesn't mean you're entitled to know.

If your sister and her daughter don't want to share the specifics, that's their right. You could get an idea of whether there's an inherited health issue in the family by doing your own family history - are there any conditions that run in the family, any history of relatives with similar health issues to your niece, any history of recurrent losses, etc. You could then discuss this with your consultant and see if they'd suggest any additional screening either of embryos prior to transfer or as antenatal testing during a pregnancy. Or, you and your partner coud go and get your own preconception genetic testing done.

But seriously, don't go harassing your sister and her ten year old daughter about private medical information they've already said they don't want to disclose.

This.

Might your sister agree to tell your doctor, in confidence? The doctor could them test for that and other things and either tell you you're clear without telling you what was tested for if anything ( as it may not be genetic) , or tell you what you might be carrying, without confirming that it is also what your DN had (as you could be carrying some completely different genetic problem).
In the end, you can only ask. Though all other things being equal, if I were in your sister's place I think I'd explain myself as afar as possible to your DN why you wanted to know, and if she wasn't unhappy with you knowing, tell you.

Ive just re-read the OP and she seems to think the father of her Dn may not know what the condition affecting his own child is because he split from the mother.

OP- you have very little idea about parenting at all. I have been on MN since 2010 and I honestly doubt I have come across anything so ignorant that was not a pisstake.

Absolutely agree. What gain would you or I have from keeping it a secret? MN is mental sometimes.

It's being sensible, not callous.

Except for the bit where OP has implied extremely heavily to her own sister "If I had a child like yours, I'd abort it". That's one sisterly relationship that's going to take a hell of a lot of repairing.