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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To want to know the condition DN is diagnosed with? Is there a way to find out?

656 replies

LovingPurpleBiscuits · 16/03/2024 11:19

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

OP posts:
Bex268 · 16/03/2024 13:44

my stance has always been that if you can’t ’handle a disabled child’ than you shouldn’t have children. This can happen either at birth or further down the line.

you sound very short sighted by the way and your sister must be completely infuriated by your attitude.

btw, you can get genetic testing done on embryos and you don’t need to have something you’re particularly looking for 🙄

Goodluckanddontfitup · 16/03/2024 13:44

I understand your concern, but I think you are over stepping here, this is extremely private and sensitive information for them, you need to stop pushing. I had IVF, and following a number of miscarriages I had my remaining embryos genetically tested to see if there were any abnormalities which may have been the reason my body was rejecting them. So you can pay for general testing without needing to know the exact condition. Having said that, it’s alarming that you are saying you and your husband would not cope with a disabled DC and he would leave you. You can’t test for every possible disability, and disabilities can happen later in life. You shouldn’t bring a child I to the world if it won’t be loved no matter what.

mondaytosunday · 16/03/2024 13:45

Can she not at least say if it's genetic? That's seems the best, though you could get genetic screening (I thought they did this anyway with ivf).

Poppyzo · 16/03/2024 13:50

A lot of disabilities occur during birth not necessarily genetic. You have stated you wouldn’t cope with a child with a disability. It’s not a choice to cope. I think your sister has had to. Maybe this is why she is being protective of her child.

Puffalicious · 16/03/2024 13:50

VenetiaHallisWellPosh · 16/03/2024 11:44

Not the same, but I was unaware a cousin of mine had epilepsy until he was 18. His mum wanted to keep it private. Fair enough. OP, it's none of your business.

Because it's shameful? Or the fear that people will judge?!

My DC has uncontrolled epilepsy, and ADHD & ASD (which we've been told is likely as a result of thr epilepsy). Life is really, really bloody hard, but no way am I keeping it secret. Are we living in 1824? Jesus.

I know this is MN, but I have no reference point for why your SISTER wouldn't tell you about a familial genetic condition. That's just wild.

I don't agree with you asking your 10 yo niece/ you aborting if it's not a perfect baby/ your DH leaving you if it's not perfect- but surely families share medical information, for understanding & support first & foremost, and situations like this too.

tacosforbreakfast · 16/03/2024 13:51

You have absolutely no right to know.

I "seemed" normal - I was diagnosed later, with both physical issues and I have autism and ADHD.

One of my children was diagnosed as being on the autism spectrum at the age of 12.

No one - family, friend, random stranger, no one at all - is entitled to know anything about my diagnoses or my (now adult) child's diagnosis.

littlemousebigcheese · 16/03/2024 13:52

Privacy, fair enough but this is your sister?! Why wouldn't she tell you?! That's odd to me tbh

BUT red flag is your obsession with only wanting a perfect baby snd your husband saying he'd leave. Why have you let that go?!

peppertrees · 16/03/2024 13:52

OP, maybe the reason your sister does not share her daughter's diagnosis is because she knows your feelings on having a disabled child. It can't be easy knowing you would abort a child with the same issues as your own daughter.

I am also the mother of three disabled now adult children. These disabilities did not become apparent until they were school age. I really don't think you should have a child, because unfortunately a "perfect" child does not exist via IVF or otherwise (not knocking IVF I had it 3 times myself).

Calamitousness · 16/03/2024 13:52

So, while you say you love your niece, are you saying that you wouldn’t want to raise a child with her challenges which to be honest don’t sound that awful. It’s highly unlikely it’s genetic or I imagine your sister would have shared it with you. But it’s none of your business if she doesn’t want to share. I can’t believe you asked your niece. She’s only 10. Yes, reconsider if having a child with any challenges are not for you. Your child could have neurodiversity, prematurity and lifelong issues from that, mental ill health as they grow up, suffer from birth trauma, subsequent trauma etc.

Blanketpolicy · 16/03/2024 13:54

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

Why on earth are you even contemplating having a child with a man who has pre warned you he will leave you if it is disabled????

I’ve asked DN but she doesn’t seem to know what I’m talking about

You asked a 10 year old? Without checking with her parents first? Way out of order!

I understand your desire to know, but your dsis and her dd's medical privacy trumps that. If you decide to go ahead with this prince of a father to be, can you and your dh have genetic testing?

Just because your dh has healthy children doesn't mean there isn't potentially something your child can inherit from him. My SIL's did not know there was a genetic disorder in her family until her brothers 3rd child was affected severely. Then when the whole family was tested they found several members had the same gene and it joined a lot of dots with different health and neurological issues for many of them.

SadMumSEN · 16/03/2024 13:54

Maybe you should learn to be a better aunty before you consider bringing children into the world OP.

Also, your partner sounds disgusting. Who on earth would think about TTC with someone who puts conditions on the relationship that are out of your control.

Disgusting.

Dachshund40 · 16/03/2024 13:56

@LovingPurpleBiscuits not every disabled child get a diagnosis, in fact many disabled children don’t have an official diagnosis. The consultants were unable to diagnose my profoundly disabled daughter till she was almost 12, as she had a rare condition that was only discovered due to medical research.

EdithArtois · 16/03/2024 13:56

I honestly can’t imagine not sharing that info with you or your doctor of I were your sister. But you can’t force her. It would change the way I feel about her.

Trulyme · 16/03/2024 13:56

Rainraindontgoaway · 16/03/2024 13:35

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.

Exactly!!

If the man I was TTC with was already talking about leaving and not being involved with the child for whatever reason, then I’d stop TTC straight and get rid of him.

I can’t imagine a woman TTC and thinking I’ll just leave the baby with the dad and not be involved if it doesn’t turn out how I want it to.

If someone is thinking about leaving before the baby is even conceived, it’s a huge red flag!

Rosscameasdoody · 16/03/2024 13:58

Some horrible replies here. And I speak as someone with a genetic disability. I agree OP can have screening done during IVF but some of you need to give your heads a wobble because some disabilities like Spina Bifida can range from mild symptoms to full blown horrendous levels of disability which will ruin the lives of not only the child, but the parents who have the responsibility of care, and without significant resources of their own will be reliant on ever dwindling levels of support.

It’s wrong for OP to keep on about it if her sister is adamant she won’t tell her, and she definitely shouldn’t be asking the child herself. But having said that, I really don’t understand her sisters’ reticence if there’s a specific genetic condition involved and it could affect OP. It’s also wrong to say that if you can’t deal with the thought of having a disabled child, you shouldn’t get pregnant. Yes, disability can happen despite screening, but that’s no reason not to do all you can to make sure it doesn’t. I think that’s all OP is trying to do, but over zealous in the process.

CinnamonJellyBeans · 16/03/2024 13:58

I am not impressed that your sister refuses to share whether the condition is inherited. This is worrying for you and I understand your anxiety. Like PP, I do agree that asking your niece was a bad decision, but I think you realise that.

You are perfectly entitled to access any kind of screening that is legally available here in the UK and suggested/recommended by a medical professional. I am assuming that if this is an inherited condition that is detectable by pre-implantation embryo screening, you are considering screening out any affected embryos.

The posters who are telling you that you are not fit to have a child are very unkind. If they have accessed the 11-14 weeks Downs, Patau's, Edward's screening that is that is legally available on the NHS and offered to pregnant women, then they are also accessing a service that offers them the chance to screen for an affected pregnancy, so I am very baffled to see this woman on woman aggression, where they are suggesting that you do not access medical services offered to pregnant women

Saharafordessert · 16/03/2024 13:58

This makes for very uncomfortable reading OP.
You certainly don’t sound ready to be a parent judging on how you’ve handled this situation….you asked your 10 year old niece what’s wrong with her?
No wonder your sister keeps you at arms length.
Your partner has made his feelings very clear…it’s seems like he is going along with this to keep you happy but is ready to bail at any moment.

Dontcallmescarface · 16/03/2024 13:59

From your OP

and she only tells people who need to know

The fact that she hasn't told you means you don't need to know so stop with the obsession.

diamondpony80 · 16/03/2024 13:59

Your attitude is disgraceful. You want to know what's wrong with your niece so you can abort your own baby if it has the same condition? And you had the cheek to ask the 10 year old what was wrong with her? Basically trying to con the information out of a vulnerable child. Private information that your sister doesn't want you to have. What are you going to do if YOUR child isn't perfect? I think maybe you should think twice about IVF as you and your husband are clearly not cut out for parenting.

MrWilyFoxIsBack · 16/03/2024 14:00

In your position I think I’d choose to remain child-free. There are absolutely no guarantees when you have a baby - and you seem sure you would be unable to cope with a disability. I don’t think your sister has any moral requirement to tell you this informational about your DN. And you don’t have a right to know it. Trying to wheedle it out of everyone is not appropriate.

Strictlymad · 16/03/2024 14:02

whilst it is a little unusual to keep this information as secret as they do, it’s their choice and their business so you will have to accept that and forget about it. I also think you and dp need to change your viewpoint on having a disabled child, that you wouldn’t cope and thy he would leave. If things are that serious it would be better to remain child free. You can’t predict what will happen. I had a healthy baby who contracted bacterial meningitis afew weeks later and now needs substantial care. This is not something I could have foreseen or changed by ending a pregnancy

PinkyFlamingo · 16/03/2024 14:02

They're nothing wrong with admitting you can't cope with a disabled child so I find it odd you are getting attacked for being honest

lotsofpeoplenametheirswords · 16/03/2024 14:02

My cousin, born healthy in 1979 contracted meningitis at 3 months old, heart and breathing stopped 3 times, brain starved of oxygen - been disabled ever since.

Girl I went to school with was hit by a van when she was 14. She now has the mental capacity of a 7 year old. She's 40.

My mums friends perfectly healthy little boy suffered a catastrophic birth, no oxygen to his brain and he's now disabled too.

Your husband wouldn't cope with a disabled child and would leave you to raise it alone? Nice man. So, you deliver this healthy child and something happens to him/her and your husband is off yeah? I'd focus on that before the IVF before meddling in your DN's information that has nothing to do with you.

Causewerethespecialtwo · 16/03/2024 14:02

If both you and your partner are certain that you would not be able to cope with a child with disability, then you shouldn’t be attempting to become parents. There is always a risk that the child may have a disability and many many conditions don’t show up on scans, aren’t obvious until birth, or only become apparent as the child grows up. What if they have an accident or become ill during their childhood? If you know that you couldn’t cope with this, then seriously do not risk having a child. What would you do - give it up for adoption age 5 when a disability is diagnosed?

Mousegotinmyhouse · 16/03/2024 14:03

YABU. I understand your anxieties, however, you don't actually need to know, nor do you have a right to know.

It also isn't as cut and dry as "if your niece has a genetic condition there is a significant chance your child will have it".

I have had genetic testing, and the consultant explained that genetic conditions generally fall into three categories. Autosomal Dominant, Autosomal Recessive and De Novo.

Autosomal Dominant: These genetic disorders only require one copy of a mutated gene to cause a child to be affected by a genetic disorder. If a parent has an autosomal Dominant condition or carries the gene, then there is a 50% chance their child will be affected and a 50% chance they will be a carrier. With an autosomal condition you tend to see at least one person per generation be affected by that condition due to the fact anyone born to a carrier will either have the condition or carry it.

Autosomal Recessive: These disorders need two copies of a mutated gene to be passed on, one from each parent. This means both parents must either carry the mutated gene or have the disorder themselves. If both parents are affected by the mutated gene then there is a 25% chance the child will be affected, a 25% chance a child will be unaffected and a 50% chance a child will be a carrier.

  • If only one parent has an autosomal recessive condition or carries the faulty gene then there is a 50% chance the child will be a carrier and a 50% chance they will be totally unaffected.

De Novo: The child has a random, spontaneous gene mutation that isn't inherited by either parent. This can lead to them being a carrier or having a genetic condition.

The vast majority of genetic conditions are either Autosomal Recessive or De Novo. And if your niece does have a genetic condition, then it likely falls into one of these categories presuming that none of her relatives have similar difficulties to her.

Hypothetically speaking if your niece's disability is caused by an Autosomal Recessive disorder, then there would be a 50% chance that you carry the same gene mutation as your sister carries. However, the chances of your husband also carrying that gene would likely be incredibly low.

If your niece has a De Novo genetic condition then there's a pretty much zero chance your child would have the same condition because that's just luck of the draw.

If you are actively in the process of IVF you can pay for pre-implantation genetic screening of your embryos if you have genuine concern that they will have a genetic disorder. My husband and I need IVF treatment and that's what we plan to do due to our specific family circumstances, because we want to be prepared.

However it is incredibly important to note NOT ALL DISABILITIES OR BIRTH DEFECTS ARE CAUSED BY GENETIC DISORDERS.

Cerebral Palsy is caused by brain damage before, during or after birth. You can't predict how birth will go, so you can't realistically plan to prevent it happening. You also wouldn't even know until after the baby was born, and you wouldn't necessarily find out the severity until they missed milestones.

Spina Bifida, Heart Defects, Cleft lip and/or Pallet and Talipes (clubfoot) are all relatively common non genetic congenital disabilities.

Things like Autism, ADHD, Learning difficulties, learning disabilities and developmental disorders are not inherently genetic, despite the fact they do often have a genetic link, where there is a higher chance of being affected if a parent or sibling is.

And that's without touching on the subject of illness and acquired disabilities.

If you are absolutely adamant you cannot cope with a disabled child, then you should not take the risk of having a child.

If you feel you could cope with a disabled child, but your husband has expressed he would leave you and have nothing to do with his child, then I would advise reassessing your relationship and deciding if you want to spend the rest of your life with someone with that attitude.

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