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 don’t really see why you need to know? Yes there’s a tiny chance it could be genetic but doubtful if no one else in the family has a similar disability. There’s are many many conditions that your baby could be born with that are not genetic, it’s something everyone risks when having a baby. If you don’t feel you could raise a child with disabilities then it might not be a good idea to have a child? Both my dc have disabilities that could not be tested for before birth.

I stopped reading at the point where you are talking about not being able to cope with a disabled DC, in that case, don't have a child.

Many disabilities present at or after birth, or even years later. It isn't fair for a child to have you both as parents, the risk of rejection is too high m.

Completely agree. Save your money OP.

Get yourselves screened and stop breaking people's boundaries

(User name change I know it's not done but pose outing!)
I'm horrified at your attitude, I had a good pregnancy, but since 8 weeks old now 10 months we've been in and out of hospital and this has included genetic testing so have been through the ringer. As part of this they asked about me, dh, grandparents and siblings NOT DNs..
I am a bit overemotional writing this so rambling but fuck do not have children if you and dh see then as disposable and defective.

I don’t mean this harshly, but there is no way currently to screen for the vast majority of SEND so you just can’t know. I’d be very worried personally about getting pregnant with someone who wouldn’t support our child if they are anything less than perfect.

@benjoin I get what you mean but I can't help think if my daughter was TTC and a genetic condition present in the family had been kept from us. It's seems a real breakdown of communication. Quite sad really.

Don't forget to ask your sister for copies of your niece's school reports so you can check for poor performance and grades, it might be genetic! Then you can mitigate the risk of that as much as you can too.

That poor girl.

I think I will go away and have a think about whether not knowing i can proceed.
If you need to think about it and your DP would walk away if your DC were disabled neither of you should be having children. A perfect healthy child can become disabled, birth can go wrong, there are many conditions you can't test for. Your DC might develop cancer, or have global developmental delay, or mental health problems. I could go on. No one who's willing to walk away from a disabled child, or who needs some guarantees before getting pregnant should have children. It really is that simple.

Really shocking that you asked a ten year old this. If I were your sister I would not let you near my child again. Also if you are this sure you would not want a disabled child, then you probably should resolve to be child free, a disability might not be evident pre birth or may come about after birth.

As an aside, I would tell my sibling, not for their IVF, but just generally I think it is something I would mention. But I would also respect somebody else’s decision not to disclose.

You were very very wrong to ask your 10 year old DN what her diagnosis is, what planet are you on?!?

You sound like you need therapy, not a baby!

I think you need to question if you should be having a DC.

Your DS clearly needs firm boundaries with you, and its obvious why.

I cannot believe you questioned your DN - if I was your DS, I would cut all contact with you - I certainly would not be planning to write to your doctor!

I say this with (some) kindness and understanding - I had a TFMR many years ago, when it became clear that my DC would not survive the pregnancy. I also have a much loved and wanted DC with disabilities.

If you are concerned about your ablity to parent a child with any additional needs, maybe think about the wider picture and don't focus on your DN. If you found out your DC had ASD or ADHD after 5, 10 or 15 years what would you do? What would you do if they had mental health issues? An eating disorder?

I understand why you feel you want to know, but ultimately, other people's conditions are NONE of your business.

If your DN is the only one in the family with the condition, I don't think you need to worry about the genetic element.

Frankly, if your sister ever speaks to you again, you will be very lucky. You do NOT need to know, you merely want to know. But most conceptions, whether natural or IVF, take place without people knowing all the possible genetic conditions and risks. They certainly take place without asking a TEN YEAR OLD CHILD to talk about her health conditions. I can’t believe anyone coukd be so self-absorbed to think that was an acceptable way to behave.

Knowing your niece’s diagnosis is no guarantee about whether any child of yours would have that or any other disability.

So what happens if you have a cold that happens to have a different disability?

I would bet money the situation from resisters pov would be very different.

Your poor sister. You are not entitled to anyone's medical information family or otherwise. I assume part of IVF is screening.

However, my understanding is most of not all ND conditions are not detectable. Your DP saying they won't be there if child has challenges. ,Really you really want to have a child with someone who isn't onboard with the reality nobody knows?

Read on here parents of 5, 10, 15 noticing ND is your Partner going to run for the hills?

I'm very sorry that the OP has upset you so much.

Surely you could get together a list of symptoms that your little niece has and google them to see what her condition is?

I think people are taking more offense than the Op meant here.

She is going through IVF. She may well have been asked if there are any genetic diseases that they would like her to screen the embryo for prior to implanting. I don't know if that's standard practice but I do know people who were asked similarly.

When she says she asked her niece, that could have been a direct question, but more likely she asked a few questions gently, realised that the dn didn't know what she was talking about and backed off.

And I don't think anyone plans for a disabled child. OP is no doubt aware that there is no guarantee of not having a disabled chance, but she is aware that if her dn has a genetic condition, that she sees how it effects her dn, then because they are going through IVF then that gives the potential to avoid it. She knows it's not eliminating the risk, merely reducing it to a potentially known risk.
How many of you jumping on Op had the screening for Down's? How many would have aborted if it had come back "positive"? If so, why are you judging someone for wanting to do what you did?

Out of my 3 dc, 2 have disabilities, one physical. Neither are genetic or predictable, although the physical disability was seen at the scan.
The one who is physically disabled is asked frequently about her disability, as in when she meets someone about 90% will ask about it in the first few minutes. And that's been the case since she was old enough to speak for herself, aged about 2/3yo.

And I have the dc I have. Times it has been hard, but we coped. If I could go back in time, and have a test that removed their disabilities, would I? You bet I would. Would I change the dc I have now? No way.

do not have a child. they dont come with guarantees

I actually thought that, too.
I think the OP, while saying she's worried about her possible child having a genetic condition, is also simply nosy about the niece.
She wants her curiosity satisfied.

IVF and raises risk of prematurity and complications. Something to think about given your fear of a child with disabilities.

Your sister probably could have discussed it with you given the circumstances provided you could respect her wishes for it not to be shared. Which given your actions you obviously could not.

However, it's absolutely disgraceful that you asked a 10 year old this. There's really no excuse and I do not buy for a second that you thought that's what she meant. There's no awareness in your posts as to what you have done especially since the kid seems not to have known

You and your DH should be having genetic screening in the first place. But the fact that your DH would leave you if any child was disabled and you are happy to stay with him means that neither of you should be having kids.

Honestly my only advice is if you and DP are so adamant that you can't cope with a disabled DC then don't have DC.
All sorts of things only reveal themselves throughout childhood.
Or the child could be very premature and disabled that way or the could have some sort of accident.

If you are so desperate to avoid disability that you are willing to trample over everybody else's right to privacy then parenthood is not for you...you can't get perfect babies on order.

You want to reproduce with a boyfriend who will dump you if the kid has health issues?

Instead of obsessing over a child's personal business, why not assess your taste in men, and your parenting capabilities?