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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be offended by this doctor's insinuation

163 replies

LittleSausageFingers · 11/03/2017 23:14

My little girl was diagnosed with a rare form of deafness this week, she's 13 months and totally gorgeous and amazing. Her condition is very rare in otherwise "well" kids... babies who have a rough start in life, hypoxia, intubation etc, can develop it, but in babies with none of those issues it's very rare. There are some gene mutations linked to it, so often genetic testing is done on families to see whether it has been caused by faulty genes.

When the doctor (who was with our normal consultant, and introduced herself as a "trainee consultant" Hmm) said that we would be offered genetic testing, she said "in case you're thinking of having more children". Both DH and I felt a bit offended by the drs insinuation that we wouldn't want more kids if they would also be deaf... We just didn't feel like she needed to say anything about our family plans. I can't stop thinking about it, she made me feel sad, I suppose. Obviously no-one would wish their child to be deaf, but it's part of who my little girl is, and she's perfect to me.

AIBU to be a bit offended? I probably am, I suppose, I don't think she meant harm, but it was unnecessary and it upset me.

OP posts:
Juliancopescat · 12/03/2017 15:43

Op we're in the exact same situation as you and I would, have and am offended by comments like this. It is absolutely a good old fashioned disablest mindset. The comments about not taking it personally and some people only wanting one are ridiculous and don't reflect the reality of what your about to deal with in your situation. Our oldest is blind from birth(very rare genetic condition) and we have a 25% chance of our other children having it. People like to think they're so evolved until you tell them your happily pregnant with a child who could very well have a disability. (I have a second child and am pregnant with our third). Part of the process for us was accepting the disability fully and once you've done that the idea that you would 'edit' your choices accordingly can feel very weird. The worst comments are from medical professionals. Our community nurse with our second said ' oh you dodged a bullet there'. We had a specialist laugh and say ' well no more kids for you two' when we got the genetic diagnoses. People are assholes! By the way my girl is doing brilliantly (And her and her siblings have as much right to exist as anyone else). Anyway I'm ranting now Blush

MagicalMrsMistoffelees · 12/03/2017 16:19

It is not disablist to want to avoid a child being born with a disease or life-limiting condition.

That's not to say that if a child IS born with a disease or life-limiting condition that they won't be loved or wanted or have as much of a right to a full, happy life as much as anyone.

But if it's possible to avoid having the disease or condition in the first place then surely that's a good thing?

My mother has polycystic kidney disease which she inherited from her mother and which has subsequently been passed to my brother. Do you think she'd change that outcome for him? In a heartbeat! We 'accept' the disease but it's not who they are and they would still be them without it so it would be bloody marvellous if we could've 'edited' them before birth to have avoided the ill health, transplants and hospital visits that they endure.

TheFirstMrsDV · 12/03/2017 16:19

so i am sorry if that was harsh but i did say i know it is harsh but sometimes things just need to be said

What part of your post 'needed to be said'?

None of it was informative, insightful or helpful.
It was just some badly put together words.

Sorry if that sounds harsh but I know you won't mind.
Being such a straight talker you will appreciate that if something is a load of bollocks it needs to be pointed out.

TheFirstMrsDV · 12/03/2017 16:22

It is not disablist to want to avoid a child being born with a disease or life-limiting condition

Deafness is not life limiting.

It may not be disablist to want to avoid a child being born with a life limiting condition but it may be disablist to assume that all people wish to avoid having a child with a disability

Chippednailvarnishing · 12/03/2017 16:24

I think my DC's have dodged a bullet, as have their children and their grandchildren by not inheriting the condition that runs through my family. It has nothing to do with their "right to exist" and everything to do with their quality of life and life expectancy.

miserableandinpain · 12/03/2017 16:25

Doesnt bother me at all mrsdv. That is your opinion. Im not going so be uoset because a stranger to.me on the internet has a different opintion to me. The question was, aibu? So i answered that i thought she was and why. The fact you dont agree is irrelevant. Afterall this is just an online forum. Sorry i am in early pre labour and feeling a bit moody so im sorry it has come across wrong but we have to just get on with things

TheFirstMrsDV · 12/03/2017 16:28

That isn't the point though Chipped.
The point is that the OP felt the doctor was making assumptions and it upset her.
And it is her right to feel that upset as much as you have the right to feel relieved.

ShotgunNotDoingThePans · 12/03/2017 16:33

Doesn't the 'editing' of a child who would otherwise be born with a genetic condition mean tbat that cgild would in fact never be born? So your brother would in fact be a totally different brother had the pregnancy been 'edited,' rather than 'himself without the disease?

miserableandinpain · 12/03/2017 16:36

And btw mrsdv i have never said she is wrong to feel like that or you. Its all different peoples opinions

lougle · 12/03/2017 16:39

Children who are born prematurely and need to be ventilated are more likely to develop necrotising entero colitis (NEC) and are more likely to require a course of Vancomycin, which carries hearing loss as a potential side effect. That's one reason why ventilated babies/children can develop hearing loss. But just being ventilated for a prolonged period carries a risk of hearing loss, along with the risk that comes from being born with a low birth weight.

Either way, it's never easy to separate the elements of disability from the unique contribution that our children bring, and it can hurt to be reminded that they are seen as less than ideal.

Chippednailvarnishing · 12/03/2017 16:42

The OP is reading into what she thought the Doctor meant and taking offence, but she says herself that she saw it as an insinuation, but didn't clarify it with the Doctor.

My comments on dodging a bullet were in response to Julian complaining about a nurse, not about the OP's right to be upset or not.

MommaGee · 12/03/2017 16:53

"It is not disablist to want to avoid a child being born with a disease or life-limiting condition*

Not all disabilities are life limiting and most congenital disabilities are not caused by disease

""A disease is a pathophysiological response to internal or external factors. A disorder is a disruption to regular bodily structure and function. A syndrome is a collection of signs and symptoms associated with a specific health-related cause.13 Oct 2015
Disease, disorder, condition, syndrome - what's the difference? ""

miserableandinpain · 12/03/2017 16:57

completely off topic.... DM are threads for stories again. just a heads incase they decide to take our arguing!

MommaGee · 12/03/2017 16:59

Either way, it's never easy to separate the elements of disability from the unique contribution that our children bring, and it can hurt to be reminded that they are seen as less than ideal.

This. OP knows she's over sensitive on this issue. A lot of people seem to be missing her entitlement to be seen sensitive on this issue. They will offer us genetic screening before any more children so if we make another one like DS we can abort. We would be actively encouraged to do so. Not informed of the choices and supported but actively encouraged.

Yes the option needs to be there but it doesn't mean w aren't entitled to be sensitive on the issue of ours kids not being seen as enough

miserableandinpain · 12/03/2017 17:01

no i do agree momma but i really don't think the doctor was insinuating that the children in question are not seen as enough. yes some can be very insensitive but what the OP described just sounds like normal procedures and information being relayed.

IamFriedSpam · 12/03/2017 17:04

I didn't even interpret that as an automatic assumption that you wouldn't want to have another child if this was genetic. Obviously since your DD as the condition and you're now aware of it it might not matter from her POV "why" she has it but if you have another child surely you'd want to know in advance whether they're likely to be affected (so you can have their hearing tested ASAP for example).

If it turned out to be genetic it may or may not affect your decision about further children but surely you'd want to know - for some people it might mean they want to have another child even more so their DD would be in the company of another deaf child, for others it might put them off another child.

I very much doubt the doctor was making any assumption about your position other than you'd probably want to know.

MommaGee · 12/03/2017 17:06

And sometimes the routine comments hurt because we're sensitive. TBH "we'll offer generic screening in case you want more children" does sound like the offer to screen out babies like her DD. I'm not saying people aren't entitled to that choice but I know how I'd feel. Our geneticist said the risk of an amnio was higher than the risk of a second baby having the same wonkey chromosomes so wasn't worth it. She'd consider it worth it presumably if the risks were higher and they'd offer an abortion at any stage if it came back positive. So yeah I'd feel like OP

Juliancopescat · 12/03/2017 17:12

No miserable, normal procedure would be to put Op in contact with genetic counselling services. 'Genetic testing' has the specific implication of aborting babies that aren't perfect. Which is in itself utterly ridiculous. I'm pro choice by the way but where's the genetic test for addiction issues or the cruelty gene. There are loads of traits that lead to a miserable life. Many of the ones we're talking about on this thread don't. You can still have a lovely life. My girl's condition isn't life limiting- she will have a different experience in life that's all. It's called diversity and it's meant to be a good thing.

miserableandinpain · 12/03/2017 17:15

i don't know all the procedure obviously but i should imagine the doctors comment was part of it. i clearly have just put my opinion in some poorly choice words which i accept and i apologise OP it was insensitive. but i wouldn't take what the doctor said to heart i think it was just general information. and of course your little girl is perfect regardless to her problem. but i would urge you to find out so that you are fully prepared if you do have other child. not so you can abort but just so you are prepared for it if it should happen again.

again i apologies and to you too mrsdv Flowers

herewecomeawassailing · 12/03/2017 17:17

This reply has been deleted

Message withdrawn at poster's request.

MommaGee · 12/03/2017 17:36

here we come ours is so baffled by him she doesn't get to be paid offensive. Definitely the way to go haha

Jaagojaago · 12/03/2017 18:49

You've completely misunderstood her.

LucklessMonster · 12/03/2017 18:53

It is totally valid to feel personally offended and baffled at the implication that you may not want to have any more children like your daughter. And that is what was implied.

Nonsense. What was probably implied is that many couples choose to stop at one child.

TheFirstMrsDV · 12/03/2017 18:56

Sorry for the misunderstanding chipped

Juliancopescat · 12/03/2017 19:47

What a load of bollocks Luckless.

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