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

Your sister is a bit of a selfish c u next Tuesday, isn't she, I'd cut her off over that tbh.

I do understand why you would like to know. Have you tried saying to your sister that you don’t need to know the name of the condition, or anything else about it, but could she just tell
you whether it’s something that you could be a carrier for as it’s important you know given that you’re preparing to go through IVF.

As others have said, there is absolutely no way to guarantee that your child won’t be born with a disability though, or have an illness or accident later in life. If your partner has said that he would pressure you to terminate a baby with disabilities, or leave if you gave birth to one, then I wouldn’t be having a child with him.

Some of you are being obtuse. I've got a disability and have been open about it to partners because I imagine having a disabled child - while you love them - is really, really hard. My sister also informed medics before having children. It's looking at statistics and knowing the reality of what might happen and if you feel you want to embark on that. And, yes, children can still become disabled but when there is a 20pc chance - that's different.

If that's directed at ops sister, agree as in op is the selfish one!. If not I don't think the one who'll be doing the cutting off is the op!

There’s too many posts to read through but god OP I genuinely hope you have had your ass handed to you on this.

How dare you ask a child what is wrong with her?! There is nothing wrong with her!!! It’s people like you who genuinely disgust and horrify me and have no place bringing up a child.

"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"

There's your real problem.
With all the tests in the world you cannot predict what life will bring. Do you really want to have a child with a man who you know will leave if things become difficult? If you have an accident or get sick yourself will he leave you?

I think your sister is being a bit of a dick. She could at least tell you if it's genetic so you can stop worrying

Autism and ADHD run in my family, I'm currently hoping that if my baby is born with autism it's not severe. I have it and I cope (sometimes just about) but I'd feel very sad for my son if he would never be able to live independently. But that's the gamble. He could be born with a million other things they don't test for. I won't know until he's here.

If you are genuinely concerned that you maybe a carrier of a genetic condition and not just curious about your niece, why not have a karyotype test or ask your consultant for additional tests assuming that you have a close relation with a genetic condition. It will cost you money but it's definitely better than offending your sister. Also, once you have embryos you can test them for some genetic conditions directly before transferring. Surely, your consultant has explained this. Having a disabled child is not only difficult for the parent but also for a child. So nothing wrong with trying to mitigate the risks.

I understand why you want to know if it’s genetic and don’t understand why she won’t tell you simply if it’s genetic or not. Although you could probably find out the information if you have any cousins children with the same.
There’s a minor learning disability on one of my parents side and exactly half of the group of cousins have it.
I do agree that any child can have a disability but it’s very hard for them.

If you cannot cope with having a disabled child then do not have children at all.
There are no guarantees that any child will not be disabled or become disabled.
If you or your partner know that you could not be parents to a child with a disability then you'll get no hate from me. It's good that you know that about yourselves. But it does mean you can't risk bringing a child into the world if you can't guarantee you can be good parents to that child regardless the child's needs.

It's none of your business and of you don't want to risk a disabled child maybe you shouldn't be having one as there is always risks as with anything in life

Another one who thinks your dsis is selfish.
No harm in pointing you in the right direction genetically.

However a dh saying he’d walk away from a disabled dc would be enough for me to bin him personally.

You’re sensible though to try and chk for a disability before getting pregnant and anyone who scorns you is being disingenuous imo.
I’m sure many of the pp’s were very grateful for all the antenatal testing they recd during pregnancy.

Wow you are literally saying you 'need' to know because if your kid was disabled like DN you would kill them rather than be 'burdened' with them and you can't see why that would upset your sister?

Ableism is fucking abhorrent.

Your child could be born with any disability or be injured during birth or during their life, if you and your husband couldn't cope with that then you may need to re think having children, sorry if that sounds harsh. If your sister has refused to tell her close family what this condition is, then you need to respect they want to keep it private. If you want to know if you or your husband have any genetic conditions then get testing done yourselves? Pay privately if you have to.

I worked at a school with profoundly disabled children. There was a little girl in another class to mine who I saw one day going out for break. She could walk and follow very basic instructions but that was about it. I asked her teacher about her diagnosis, she’d been in a car accident as a toddler and it had taken her from a totally normal child into an incredibly disabled one. It’s one of the reasons I’m so passionate about car seat safety now and one of the reasons it sounds like having children may not be for you.

Hundreds/thousands of disabilities can’t be screened for. Even Downs can’t be checked with a 100% accuracy (afaik). Disabilities can pop up at any time, with any reason. Rett syndrome for example, is regressive- you start off with a totally ‘normal’ child who walks and talks and then starts to lose skills regressing them back into a baby state. The little girl I cared for at 15 years old with it, had no bodily control, no speech, couldn’t eat and was in a wheelchair full time.

Autism you can’t test for and it’s often not diagnosed until 3, and that’s quite young for a diagnosis.

If you feel as strongly as you do, to be accosting your family as you are- then children and the unknowns that come with them, are not for you.

im not even going to start on your partner, and the gem that he is…

Yes this is disgusting! Your poor niece, you should be ashamed! How would you feel of you ever do have a child about someone interrogating then about their private medical business?!

You sound like you’ve gone so far down the IVF rabbit hole that you’re not thinking straight or seeing sense. If you’re stressing about this and couldn’t cope with a handicapped child perhaps parenthood is not the right path for you.

Does your sister know that you went and asked her ex husband and her young child after she said no? You could have destroyed your relationship over this. You’ve probably already hurt her by insinuating that her child is something you’d want to avoid giving birth to. You really need to think about what you are doing!

Pffft, all this outrage here. YANBU, OP. I'd feel the same as you and your partner. And as for actively not wanting to have a child as your niece - well of course not, why would you? I wouldn't. I'd go no contact with the sister, tbh.

Also genetic could be fine and your child could be in an accident, you gonna ditch out on them at 10 when they have been in a car crash or suffered oxygen deprivation from an allergic reaction etc...?

I would not have behaved as your sister has all those years, being all secretive as if they're ashamed of it, as opposed to the wider family knowing and being able to educate themselves about the condition, and show interest in any new developments the parents may have been excited or proud about. You can just imagine the horrible whispering at get togethers with people who don't know the child, asking OP what condition she has and if she'll ever be able to do x, y or z. She'll become talked about as the child "who has something wrong with her" rather than "DN has a rare condition called x" or "DN has cerebral palsy" and a discussion based on actual facts rather than gossipy assumptions.

As for saying "it's for DN to say" about a child with special needs.....words fail me.

I can understand your frustration, OP, but as odd as your sister's behaviour is, she isn't going to back down, and I certainly don't think you should have approached a child of 10 to ask them about something as adult as that topic.

Most conditions will either be non-genetic eg cerebral palsy, or random genetic mutations/ variations eg downs which won't impact the risk of that condition in the wider family. In the situation where there is a condition with a strong genetic link, your sister will have been informed of this and if the gene has been identified, your sister will have been advised to contact first degree relatives for testing. So either:
a) this hasn't happened and you don't need to worry
b) your sister has been told to contact you and is ignoring this advice. In this unlikely scenario, you repeatedly asking her isn't going to change her stance.
No paediatrician will disclose medical information about your niece to you. They would lose their job.
So, you need to forget about it, move on, and leave your poor niece alone.

You don't give up do you?
You have convinced yourself that having this very personal information about someone else should be given to you. Stop trying to rationalise why you need to know - you don't.
Get on with your IVF and stop pestering everyone else

I don't think you should be considering having a child 😳

There is extremely interesting case law on this

https://ukhumanrightsblog.com/2020/02/29/doctor-patient-confidentiality-in-genetic-disease-case/

https://www.phgfoundation.org/blog/abc-v-stgeorges-new-duty/

I'm not legally qualified or an ethicist but it seems there is, in some very specific and precise cases, a duty for doctors to reveal such information (to breach confidentiality) but in general confidentiality would be the obligation.

Even if you had the details of the doctor, they would I imagine be in serious professional breach of their obligations if they revealed any of the niece's medical information. The ABC case and the links above outline that revealing this information could only be done if the relative to whom the doctors were giving the medical details, were already their patient so they owed a duty of care to them as well.