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'm baffled by people who wouldn't test for a inheritable disease, particularly if doing ivf anyway. There is an inheritable disease in my family and everyone, where relevant, has had genetic counselling and testing once they've decided to try for children. Everyone. The disease is often very mild but in theory, could be very bad. None of the older members of the family ever suggested they were hurt by people being tested (with the implication they might select embryos or abort a baby, not have children etc......) And they celebrated when by some miracle all of one generation had avoided the 50:50 chance of inheriting the gene/s. They were happy to have healthy descendants who wouldn't suffer how they suffered. I always thought that was a perfectly normal reaction.

The more I think about this. The more I think he doesn't want a child.

The poor child if they aren't perfect.

If they have health conditions, learning difficulties or just any of the multifaceted things that can happen at life.

You absolutely, categorically shouldn't be planning to have a child with someone who tells you that they will leave if it gets difficult.

And you know he Will because he has already separated with the mother of his existing children

i can’t get over an adult asking a disabled child “what’s wrong with you?” 😞

Sorry OP but are you THAT dense? Or just feigning naivety in hope that people can overlook the fact that you asked a TEN YEAR OLD with certain disabilities what is wrong with her?!!

And my honest opinion judging from your original post, two replies, and the supposed actions you have taken, are, do NOT go through with IVF because you don't seem very equipped to navigate any complexities through raising a child, disabilities or not.

I havent read the whole thread but along with others I am quite shocked at this

And when someone says 'its up to my daugher to share that information if she wants' they dont mean right now as a 10 year old.

You say she has problems walking and talking, but you expect her to be able to set out for you whatever her condition is? Does she even know/understand, has she processed it?

I wouldnt have thought so, its not like having diabetes, this seems to be something that affects her speech and language so she may also have a processing disorder (not guaranteed)

anyway regardless, you shouldnt have asked and unfortunately you are not entitled to know

I'm puzzled by the vitriol on this thread. Asking DN about her condition wasn't ideal, but I completely understand why you'd be keen to find out what it is going forward and how much of a big deal it is. I have a severely disabled child and would never go through it again. Wanting to avoid an obvious genetic condition seems natural to me.

That said, I do agree that if you know you couldn't cope with a disabled child there is absolutely no way of knowing you wouldn't have one, whether or not DN's condition is genetic. And as DH has said you'd be on your own, it seems a very risky decision to have a child.

You don't deserve all this hate though. I think most of us kind of hope for the best or have our heads in the sand a bit. I never even contemplated the idea I'd have a disabled child. You at least have a head start in that due to DN. But it's horrible knowing there are no guarantees in life whatever precautions you take. That is why I decided to never have anymore kids, even with a different partner. I knew I couldn't do it. And now I'm too old anyway.

I hope you make the best decision for yourself and any future kids.

I am also the parent of a disabled child. I don’t know about you but so many people say things to me along the lines of “I don’t how you cope, I wouldn’t be able to” etc. I think they think they are being nice, but it is v upsetting.

I cope because not coping isn’t an option - i don’t love my DD any less for being disabled and I certainly can’t take her back to the shop…I am sure if OP did happen to have a disabled child she would find exactly the same.

I think a bigger worry is this (IVF) child could inherit the mother’s stupidity and lack of sensitivity together with the father’s issues with commitment to the role of being a parent.

It just occurred to me that you think things in a very literal sense, hence thinking your sister meant to be able to speak to your niece about her medical condition now rather than as an adult. Perhaps you are neurodivergent yourself in some way, hence if you have a child, they are very likely to be neurodivergent too, so I think trying to have a child free from disability or medical conditions is going to be unlikely.

@TheCoolOliveBalonz I understand wanting to test for genetic diseases, but the way OP has been going about it is NOT acceptable - asking a child directly and for their doctor in hopes of what exactly??? The niece and sister are entitled to their privacy.

Also clearly, this condition isn't some "inheritable genetic disease running through her family" because then the likelihood would be that at least someone else in her family also has the same prognosis?

Yabu. My boys have a genetic condition and we was told by the nhs to inform family. We had a duty of care.

However we was poo pood by family. Mil and fil point blank ignored us and the offer of testing to see if it had come from them. Bil said I was mistaken and it was a deficiency. I have a biology degree and the genetics team at St George's London I hope have more than a biology degree. St George's agreed we had discharged our duty of care by informing immediate family.

So honestly your told to tell those who need to know. Dn may have a genetic condition. It could be novo and therefore zero of interest to you.

If my neice or nephews did inherit any regressive condition I can not help them now, they would need to ask for their own kids micro arrays as an aside, I'd never disclose that info as the chance it's gone through two generations with zero effects is enought to say it would be of no note. It's private now. Dh is the carrier. If we could not get his parents to see if it was de novo in dh, and his siblings wasn't interested then there's no way the nhs would pick up someone four times removed, decades later with every chance that no direct ancestor had this condition. There's every chance its either de novo or from someone not genetically related to you or dh.

I think your sister should at least tell you if the condition is genetic from your side of the family, even if she tells you nothing else.
I really don’t understand why she won’t tell you or her parents what the condition is - this is very odd to me.

@Katherineryan1986 I agree it’s odd, and a bit cruel.

perhaps your sister thinks she will be blamed for the delay in her daughter

have you asked her gently if it is a genetic condition, and explained your reasons for wanting to know,

A friend who was adopted developed a genetic condition. She was told to let her birth family know if possible. She did manage to and was thanked.

She might have been fine. DS2 has always been front and centre about his disability and why not? It's secrecy and hiding that promotes shame, not a diagnostic label.

I can’t get past the fact that your DH has told
you he will leave you if you have a disabled child, and you still plan to have a child with him.

If you think this is a rare failing you are sadly mistaken. Can't count the number of fathers who hoof it when serious disability comes on the scene. At least OP has fair warning.

In an ideal world, yes you should have knowledge of the degree of genetic risk here. Many families would be happy to share this with each other.

However, given your approach to this seems to be 'tell me about your child's condition so I can destroy any embryos that are like them' I am not surprised your sister doesn't want to discuss it with you.

The genetics of many rare conditions are not yet well understood so there is a strong likelihood that knowing the diagnosis wouldn't help. I think your best bet is to do routine screening for trisomies etc and any conditions strongly associated with your ethnicity, if there are any.

My disabled ds has no known genetic cause for his disability ( but little is known about genes overall so this does not mean much ! ). A recessive gene genetic issue unrelated to his actual disability was found though and the doctor said ds2 could have genetic counselling later on if planning a family so if anything relevant or specific had ever come up about your dn, the doctor would likely have advised something similar. It's not a big issue for us though as chances of a ds2's partner having the same recessive gene as him ( if he even has it himself) are very very unlikely

I think all you can do is ask for planning purposes whether she considers - having spoken to her doctors - whether you have an increased likelihood of passing on the condition. But (if it's not too late) it would be better to explain that this is so you can plan (longer maternity leave, part-time work, living close to family) etc etc than because you'd terminate a pregnancy if the foetus had the same condition as your DN.

Your sister may feel really quite hurt that you would "screen out" a child with her daughter's condition: she will love her daughter beyond words just as she is.

Children can become disabled during childhood (accidents etc). So as PP have said, you can't reduce the "risk" of being parents to a disabled child to zero.

Wonder why DP and last wife split up, he seems non reliable.

Sadly, I know. My point is that I don’t understand having that fair warning and then heedlessly proceeding anyway.

If you’re worried about an inherited genetic condition you have the option for pay for full genetic kareotyping

Some disabilities eg Autism adhd etc are not ones you can screen for, what would you do if your dc has one of those disabilities?