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

Could you instead rephrase the question to your sister as, before I embark upon IVF, are you aware of any genetic conditions that you might be a carrier of? If so, would you kindly write to my Dr in confidence.

Your efforts might be in vain as genetic does not always mean inherited - de novo (for the first time) glitches in the genes can happen at the time of conception and so cannot be determined in advance.

@Simonjt

I'm so sorry to hear about DD XX

You're very lucky to have her & she's very lucky to have you both (and DS) I hope you get all the help you all need xx

Abortion isn't murder but it does involve killing a foetus (and realistically, people almost always refer to a foetus as a baby - no one ever says "the foetus just kicked"). Not a nice thought, but it is what it is. There isn't really any way of sugar-coating the fact that the OP would abort her child if they had the same condition as her niece. Of course her sister finds that upsetting.

Yabu
you are clueless.
I do understand that you want to know all risks. Just not possible.
many “disorders” difficulties” cannot be detected through genetic testing.
what if you have a difficult labour and your baby get oxygen deprivation and then becomes “disabled”
your child may have no genetic abnormalities but turn out to be very very difficult baby/child/adult
I think you aren’t ready to be parent. Get a doll.

Seems it's something your sister is ashamed of, feels guilty about or simply lowkey wishes it replicates itself in someone else in the family.

Every member of the family should be looking out for the others.
She should tell you and others of child bearing age in the family to get screened if possible.

This is really selfish thinking to not divulge and to them claim it's up to her daughter. Why doesn't she leave it up to her daughter to choose her names, what she eat or where she schools!?

If DS child is the only child in your family with difficulties, there is a good chance that this won’t affect any of your offspring.
There are so many reasons that your DS may have for not sharing
But it would be good for her to at least let you know if there is an hereditary risk element

Been there and got the ivf t-shirt and I do understand your concern, but to a greater or lesser extent we all face this risk when we decide to have children, fertility problems or not.

I appreciate that it’s an additional cost but having your embryos tested for genetic abnormalities could help lessen any risks.

Also a partner who says he would leave you if anything was wrong should give you pause for thought.

If I was your sister I'd never speak to you again.
You want to know what's "wrong" with her child, so you don't end up with a child like your niece.
If you can't cope with a mildly disabled child then don't have a child at all, because any child can become disabled at any point. My BFs child got meningitis at 3 and id now blind with severe LD. What would you do in that situation OP?

Knowing that there is a genetic condition will only prepare you for the possibility of it impacting your own child.

Knowing the name of her condition will not increase the likelihood of you finding out during your pregnancy of an abnormality/diagnosis.

You will have access to the same antenatal care whether you know about the condition or not.

I think you need to let it go.

If a man told me that if I produced a disabled child he'd leave me to raise it alone I wouldn't be able to look him in the face again let alone keep doing IVF. You've got a room-sized elephant that isn't your DN to think about there.

I don’t think you have a right to this information, but I’d expect most people would willingly share it in this situation.

I think that it is extremely odd for your sister to act as if your DN’s condition is some deep dark secret that can’t be shared until DN is herself old enough to understand the full situation. Whatever her condition is, it is nothing to be ashamed of. Have you actually asked her if it is genetic? Whether your DN had genetic testing as part of the diagnostic process? If she confirms that it is not genetic that’s one thing. Or ask if she can inform your consultant of the condition so that you actually do not need to know unless he thinks it is relevant. Obviously with some conditions you can have genetic testing on any embryos produced during IVF before transfer.

I think it’s potentially important. There are some genetic conditions where one person may have much more severe symptoms than another.

You could ask your consultant to run a variety of genetic tests on you and your partner before proceeding, but how thorough that can be or what it would cost I don’t know.

I do totally get why you want to know as much as possible and I agree that’s sensible, but…As others have said, anyone can have a disabled child for a multitude of reasons, and any child can become disabled at any time. If you had to cope, you probably would although it would be very tough. If you feel doubtful about proceeding in this situation without certainty from your sister, then perhaps you shouldn’t be going forward with the IVF.

If your sister doesn’t know the name of the condition then her dd’s GP should have a letter from a doctor she saw.

However - I find it strange she hasn’t told her close family.

If I was caring for a child I would want to know if they had a diagnosis in case of emergency

possibly one of the saddest posts I’ve ever read on here. I say this as the mother of a DC with disabilities that I don’t share with others, they are obvious but don’t hold her back so what business is it of anyone’s to know the how’s and whys.

Her disabilities aren’t genetic they were caused by a birth injury, at what stage would a disability be something you could cope with? Birth? Falling of the changing table at 18 months and sustaining a brain injury? Run over at 5? Car crash at 16? Would you still get rid of them then. If so I wouldn’t waste my money on IVF.

This is very very good point.

Wow!!!!!!

None of your business completely overstepped. You have been told no

Also, just to add, having a child absolutely isn’t for the faint of heart. Anything can go wrong, even when everything seems fine.

In your situation I would chose not to have a child. You are already saying your partner would leave and you would end up a single parent. Thats not a recipe for a lasting relationship. Parenting is bloody difficult with or without a child with a disability and anything can happen. What if the child has an accident or illness and it results in a disability? In saying that you honestly don't know what you could or couldn't cope with until it happens. My life turned out a lot differently than I'd planned but I've adapted. Having a stable supportive partner is what helped me through the difficult times. The

There is a reason why they haven’t told you! I am afraid you are well out of line.

anyone can have a disabled child for a multitude of reasons, and any child can become disabled at any time

true, but you don't have to invite it by having a child with a known genetic condition. It's bizarre that the OP's sister won't help.

But I also think the bigger problem is your not very darling partner. Do you really want to go through all this effort to have a child with this man?

Same 🫤

Leaving aside you asking the niece and your husbands terrible attitude, I can't believe you don't already know about your nieces condition. Do your family not talk and share information. Do you ask how she's getting on in school? Ask why she wasn't talking or whatever? I can't imagine not telling my siblings about my child's disability. It makes a difference to life.

It depends how it affects the child surely?
My son has a rare chromosome disorder, he's severely autistic, and has severe learning disabilities ,but you could not meet a healthier child ,unless the genetic condition has a direct impact on a child's health likely to cause an emergency why would you need t9 know exactly what it is ?

@serin well put. OP it’s non of your business.

You asked a child this? JFC