Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Flip

1 2 3 4 5 6 7

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" ) 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:

Applebite · 12/03/2017 08:08

Sorry OP, I think that's just a standard phrase she would say to any parents who have any number of children and a potential genetic condition.

for getting the diagnosis which must have been tough for you all.

yomellamoHelly · 12/03/2017 08:09

Think it's their mind-set to be honest. We were met with lots of disbelief / incredulity that we didn't want to subject tiny ds2 to lots of tests either and reacted with horror when they discovered I was pregnant again. You have to consider all their training, experience and what kind of person would do that job.
FWIW five years down the line we did go through those tests though after we'd found something else out (and it became quite important). So you might change your mind one day and it's fine to go back and say that. (That said ds2's tests found no mutations or duplications so we're all still in the dark prognosis-wise.)
And life can be very hard with a disabled child and it only gets harder as they grow. And you have a lot of battles to fight against everyone for everything. I don't know how that applies when your child is deaf, but if there were a high chance that you'd have more than one child with that condition you might think again. So I can understand others choosing differently.
With us too I have a 3 in 4 chance of having a severely disabled son. Was very lucky with my eldest. My third pregnancy happened to be with a girl (luckily, in hindsight). So she may well be a carrier (and will have to be tested - have declined for now as she's only little) and will have to consider her own pregnancies very carefully.
It's a responsibility.
So sometimes that knowledge can educated decisions.

TheFirstMrsDV · 12/03/2017 08:12

Hi Little Sorry if this has been said already but I have to go out in a bit so didn't have time to read it all..

It is standard to offer genetic counselling to all parents with a child with a condition with even a suspected genetic cause.

Are you sure the doctor said 'testing' and not counselling? If they did they may used it as a shortcut i.e. a meeting with a counsellor and then the option of genetic testing.

I understand your upset, particularly at such a sensitive time. The medical profession has a long and inglorious history of being rubbish at this stuff.
There was an interesting study done some time ago talking to parents of D/deaf children. Most of them had been told their children were D/deaf in similar tone to parents who are told their children are terminally ill.

This is the Medical Model writ large. It fine for you to reject that.

acquiescence · 12/03/2017 08:13

Do you know what pre implantation diagnosis is? Google and have a read. It means potential parents use ivf and the embryo can be screened for the genetic issue. The deafness that your daughter has may be screenable and the trainee consultant (which is a real thing - most professionals need to train!) may have been referring to this. I don't think it means you wouldn't want another child who is deaf like your daughter, it is simply allowing you to be as well informed as possible and have choices, which is an amazing thing.

PacificDogwod · 12/03/2017 08:17

In the gentlest possible way, I think it DID need saying because you had not previously thought about what a genetic link may imply for possible future children.
I am saying that as somebody who carries a genetic risk of 1:4 for 2 different trisomies (not Down). And we still went on to have 4 children (all healthy, one a carrier like me).

You absolutely should be offered genetic counselling and be made to think long and hard about various and sometimes painful and unpalatable possibilities. You then decide whether you want to go ahead and have genetic testing.

Clinical geneticist IME are amazingly good at explaining very complex circumstances so they are clear.

Maybe the doctor you saw could have phrased things somewhat differently, but clearly whether or not your DD's condition is genetic DOES have an implication for future family planning and you are better 'being made' to think about that before you are trying to conceive again than not even if it is hurtful.

DrAbbyYates · 12/03/2017 08:20

obviously it could be easily misconstrued

No, it couldn't. I think you've conceded that you are (understandably) feeling very sensitive about the whole situation but the doctor really didn't do anything wrong.

Furthermore, if you did decide to have more DC and you did choose to take up the genetic screening and counselling, it is no reflection on your love for your DD1.

allegretto · 12/03/2017 08:27

I think you were feeling understandably sensitive about the subject but you have completely misconstrued what she said. (And there's nothing wrong with being a trainee consultant!)

Godstopper · 12/03/2017 08:29

Nothing unreasonable.

My deafness is genetic: I was tested for a mutation in the connexion 13 gene, but nothing was found (v. common, many genes haven't been discovered yet).

I also have a rare cancer causing mutation which, to my mind, is more serious. I've been offered pre-implantation testing for that. That's one where I think it would be irresponsible to deliberately bring a child into the world with it given it's not curable, and there is nothing you can do to reduce your risk (like those with BRCA can).

HappyFlappy · 12/03/2017 08:37

I wouldn't be offended - I think the doctor was most likely thinking that if there was a likelihood of further children being deaf, then you would be better to be prepared for the fact so that you would be most able to recognise it very early and ut the most effective methods into practice to enable your baby's early communication.

It would never strike me that she would be implying that you wouldn't want to risk another deaf child. The deaf community is a huge and very supportive one. Obviously, hearing or not hearing affects one's life, but it isn't a life-threatening condition, or one which means the child would be in horrendous pain. I really think the doctor just wanted you to have all the details - it's what's called "informed consent". You have all the facts, the decision is yours.

Whatsername17 · 12/03/2017 08:48

I think you are being a little sensitive. The consultant might have meant that in being tested you are then prepared for the fact that your subsequent children may have the same condition, because it's genetic and not just an anomaly. With my 2nd child I had the downs/pateau test. Not because I would have terminated- I wouldn't at all, but because I wanted to be prepared for a baby who might have health conditions linked to these syndromes and prepare our eldest. Congratulations on your lovely little girl.

ShotgunNotDoingThePans · 12/03/2017 08:48

I think you'd have received more of the few measured, empathic responses you've had here if you'd posted on the Special Needs board op.

GU24Mum · 12/03/2017 08:55

Hope your little girl is OK. I'd read it as the doctors saying that if you were thinking of having more children then you may want to look at the genetic position - but if you aren't planning any more then essentially there's no need to. I wouldn't take offence.

AnoiseAnnoysanOyster · 12/03/2017 09:07

You are being over sensitive but you've been through a lot. They offer you genetic testing so you are prepared and informed should you wish to have further children. Also it will affect your children's children and decisions they make. It's better to have all the facts and known risks. Else you'd have families coming back saying 'but you never told me it might happen again'.

MargoChanning · 12/03/2017 09:09

YABU and I speak as someone with a genetic condition myself. As a doctor, it is her role to give you all the facts and options available. She is not a mind reader. Another patient may well have been wondering about the impact on future fertility. Besides, she's not judging you - she's not saying you shouldn't have children. And one aspect of genetic counselling is to consider whether it's a condition that can be screened for with IVF, which some people may want to consider. If you don't, that's fine, but it's her job to present these options to you.

miserableandinpain · 12/03/2017 09:12

Yabu. They have to say that. She wasnt insimuating anything. They are letting you know the risks so you can base your decision on that.... no one can say anything any morr without someone eing 'offended' or 'hurt'. But if they hadnt said this ti you and you had another child with the same condition i am sure you would say if we had known we wouldnt of had another or something along those lines. I empathise with you. I really do, but this needs a bit of common sense here

miserableandinpain · 12/03/2017 09:13

Sorry on my phone. Bad spellings

Kennington · 12/03/2017 09:15

The NHS was really strong on genetic testing for me and my DH due to a genetic trait of mine resulting in a really difficult illness to manage.
I wouldn't be offended. Some people cannot cope and choose not to have children as a result. Your consultant wouldn't know this.

inlectorecumbit · 12/03/2017 09:16

Massive over reaction OP

miserableandinpain · 12/03/2017 09:20

And people wander why the term snowflake generation is thrown about. Sorry i know i sound very insensitive but sometimes i think bluntness is needed. If it causes offense so be it.

Voice0fReason · 12/03/2017 09:23

Its the inference that you would have done things differently if you'd know your daughter would have a disability.
That is absolutely not what is being inferred!
Your baby was 4 weeks old, you could well get pregnant again at any time. You needed to be fully informed of the risks.
I don't know how Drs are supposed to provide the information if they are not allowed to mention the subject.

I was given a genetics appointment to help me understand the chances of passing my own condition on if I had children. It didn't even cross my mind that anyone was suggesting that people like me shouldn't have been born.

Annesmyth123 · 12/03/2017 09:29

I think you got totally the wrong end of the stick. I read it as much as so you can be prepared not that you might not want your little girl or anything

Why the face about trainee consultant?

Verbena37 · 12/03/2017 09:41

Ok so I think, that whilst she wasn't trying to offend you, I think perhaps she could have worded it differently but often, consultants tend to be very black and white so as not to confuse and don't tend to be flouncy with their words for that reason.

Had she have said;
"Some parents find they want genetic testing so as to decide whether or not they plan for future children. I'm not implying that you would choose not to have children because the baby could potentially be deaf, but we explain it to all parents in csae they do want to know".

OP if she had worded it like that, would you have felt a bit better?

Annesmyth123 · 12/03/2017 09:45

It all kind of hinges on exactly what way the consultant worded it. And the op can't remember.

TheFirstMrsDV · 12/03/2017 11:01

Are you the sort of person who just says it like it is miserable?

DoItTooJulia · 12/03/2017 11:02

for you op.

It's easy for everyone else to be militant about this-but you're going through a lot at the moment and I don't blame you for being sensitive.

I'm sure the dr didn't mean it how it seemed (here have some genetic testing so that you don't have the horror of another disability foisted on your poor future children), but I don't think that makes it any easier if you feel that was the implication, but perhaps with time you'll see she didn't mean it like that at all.

Flip

1 2 3 4 5 6 7

Swipe left for the next trending thread