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

This is one of the most invasive and entitled things I've read in a long time. And selfish the nth degree.

You have ZERO right to know. If the family wanted it shared they would have.

I don't believe you're ready to be a parent. No one, and I mean no one should approach a 10 year old the way you have. The damage you could have caused mentally and emotionally could potentially have long reaching consequences on her self esteem.

Pregnancy carries risks including disability for the baby, yourself and even death. This is a discussion you should have had with your partner. What happens if an epidural goes hideously wrong or your left with double incontinence, develop a life limiting autoimmune disorder, have an atonic uterus and hemorrhage litres (I did and believe me recovery wasn't fun), retained products or an embolism, a horrific 4 degree tear and any manner of other issues will you be able to cope with that plus a baby needing to be fed and looked after? There's no test for these issues.

They test (more so privately) and screen for genetic issues and disorders. Just pay the money and get on with it but leave the 10 year old alone.

Please don't have a child. Children can be born with disabilities or develop them later in life. You can not predict a wide range of additional needs. The fact that you think you can't cope or that your husband would leave you is a pretty disgusting attitude. You need to be prepared to love and care for your child whoever they are and whatever difficulties they may have.

You say you’re looking towards IVF - you can have embryos screened for certain conditions if you know which ones (obviously you don’t; that’s why you’ve created this thread). You can also have embryos screened for any chromosomal abnormalities (ie if there are any missing or duplicated). These abnormalities can often cause disabilities.
I’m not sure where you stand on this with the NHS (mine was funded because I do carry a genetic chromosomal inversion and was aware of this before I began IVF - the screening was the reason for it, in fact) but I believe you can pay for screening if you go private, without any ‘proof’ of diagnoses in the family, so to speak. Good luck, OP.

I can understand being concerned, a friend with disabled DC said she wished she’d done genetic testing before conceiving. However, your sister must be feeling horrible that you’ve asked several times and been very pushy because you basically don’t want a child like hers. It sounds like she hasn’t told anyone (perhaps even her daughter) so it must be very personal. At this point either do generic genetic testing or don’t have a child if you feel you couldn’t cope with anything less than perfection

What is your DP going to do if one of his kids ends up with a disability due to an illness or accident, is he just going to piss off and walk away?

there would be no way I would share my DC medical condition with you both given what your have said in your post.

Finding out if it's genetic won't tell you anything anyway. It could have been passed from her father. You are assuming it would be a gene carried by your sister.

Have you considered having genetic testing yourself? And your DH?

As for your DH leaving you if you and he produce a disabled child, I have no words.

Go and have a good long think.

There is absolutely no way to guarantee a non disabled child. Even the IVF PGD process can only pick up a tiny fraction of known disabilities. If you are adamant you wouldn’t want, or couldn't cope with, a disabled child - best choice is not to have one. It’s not a mail to order service 🙄

YABVU. Having a child brings all sorts of risks and possibilities. If you know you are unable to accept or cope with the consequences of these risks you probably need to think carefully about whether it’s appropriate for you to have any children at all.

It’s a bit weird your sister doesn’t do normal family chat about her child’s condition. It’s quite weird she won’t tell you even if it’s genetic, but perhaps she realises you’d abort a baby that had it and understandably that deeply offends her. However the key point to make here is that it sounds like your partner has said if we have a disabled child then I’m outta here it’s your problem. Nobody should try for a baby with a man who says that, honestly nobody should be in a relationship or even be friends with someone who would say that.

YABVU - talk to your doctor and get genetic counselling if you feel you need it but leave your sister and niece alone.

There's a lot going on here.

I understand your sister wanting to keep her daughter's medical diagnosis private, but it is unusual for her family (parents and sister) not to know. Particularly if the parents babysit.

You've said your niece is 10 and has issues with talking - how on earth would you expect her to be able to communicate her medical diagnosis to you? That is something that most 10 year olds would struggle with, let alone one with a condition that impacts their talking. Also horribly curious to know "how" you asked the question as I can't imagine an appropriate way to ask.

Finally, I agree with pp's. There are many medical conditions that cannot be detected before birth, that may be caused during birth or may be caused by illness or accidents after birth. Knowledge is power and I, like you, would want to know of an increased risk of issues before birth, but I do think you need to consider that a child can have disabilities or medical issues for many reasons, not just genetic, and that you and your dh have to understand that.

Is your DN in mainstream school and does she have many medical appointments? Do you have no idea or suspicion what her 'condition' is?

I understand why you want to know your DNs diagnosis but unfortunately if your sister is not willing to share that information there's not anything you can do about it. I do think it's odd though as having a disability isn't something shameful to be kept secret. But each to their own, if that's her wish you have to respect it. I hope it doesn't cause a rift with your sister OP.

I’m sorry and I may get flamed for this but I think it’s disgusting when people come on here and feign sympathy with the ‘they do so well with (their booby prize) dc but I want better than that’.

Screening only goes so far. There could be problems during labour that cause disabilities, illnesses such as meningitis can cause disabilities, as can accidents. There are no antenatal tests for autism or learning difficulties. Saying you wouldn’t cope means nothing because if any of those things happen you’d have no choice but to cope.

My daughter is severely mentally disabled. She is completely incredibly and my life would be all the worse without her in it.

I assume as you want your nieces medical details shared freely, you are also happy for the reasons behind your infertility and any other tests shared after all fair is fair.

I feel very sorry for you, my dear. All I can tell you is this. I once had to get blood tests to see if there was a genetic problem (there was not). But when I went to get the tests done, I was told that I had to share any information with a sibling - precisely for this exact reason. When they said "had to", it was not telling me that I was LEGALLY obliged to, more moral, although I wonder...

So if your niece has a genetic disorder/condition, then it surely makes sense that your sibling and the niece's father have also been tested. So the way to go is not to investigate your niece's genes, but your sister's. Your niece (if she has a genetic condition) could have been affected by her father or even by a spontaneous genetic mutation of her own.

The only suggestion I could give is for you to get genetically tested yourself for conditions you think your niece might have (I believe this is very expensive). Or even say to your sister that you have to get tested for something and has she ever been tested herself?

Of course, your niece's condition might be environmental. In addition, if all has been well inside your family, it sounds like it may have come from the father's side (if genetic).

Take care and much love. xxx

It's not your place to know and being honest if your not able to take care of a disabled DC and your DH would leave is it really the right thing for you to have a child? Not all disabilities show in scans or even babyhood.

This is said as mum of a child who is disabled and whose condition would never have been detected in utero. I wouldn't change him for the world.

Surely she could tell you whether there was a genetic link without actually telling you the condition?
Can you ask your doctor for advice on how to move forward
It wouldn’t be foetal alcohol syndrome would it , maybe that’s why she isn’t telling you

It was completely and utterly unreasonable of you to question a 10 year old child about her condition, but I suspect you probably know that already.

As you are thinking about becoming a mother yourself I would suggest that you take some time to reflect on how you would feel if someone demanded very personal and sensitive medical information about your child, and then pressured your child directly to obtain that information.
You have massively overstepped a very clear boundary and you should be apologising to your sister and DN, instead of plotting about how to get the information via other means.
I would suggest you consult a genetic counsellor privately to address your concerns about having a healthy baby, and see if you can undertake generalised genetic testing prior to becoming pregnant.

But in the meantime please stop harrassing your family for information that you have no right to obtain.

YABU the condition is unlikely to be genetic and if it is it’s less likely to be hereditary and more likely to be mutation. I can understand your concern when you are not knowledgeable about these things but it worries me when you say you won’t go ahead with IVf if there is a risk of inheriting a disability from DN. there is a risk of a disability anyway regardless of family history. As there is risks of having a child and them acquiring a disability or having mental health problems

I have a 10 year old with disabilities and I found your post really offensive. I can't imagine a family member asking about my child's disability to try and avoid having their own child with the same condition. Your sister has said no and you have repeatedly asked her, asked your parents to ask her and then questioned a 10 year old. You are not going to get this information and you are not entitled to have this information. If you and your partner feel that strongly about parenting a disabled child then I would suggest that you don't have one. Lots of children have disabilities that can't be tested for or become ill/disabled later on.

@Bluegray2 this was my first thought too.
I have friends that foster children whose parents were addicted to drink/drugs while pregnant and the children all have speech/mobility issues.

that could be why ops sister is reluctant to talk about it.

however, I would not have a child with someone who openly admits they would leave if the child has a disability- that’s awful!

I wholeheartedly agree

I think you need to let this go OP. Much as i understand your reasons for wanting to know are important to you, really it wont achieve anything.
I read once a really surprisingly high percentage of people are not their father’s child - affairs etc. So, unless you are going to have your parents, sister and yourself DNA tested, you've no real guarantees that a genetic link is there regardless. Try to stop worrying.