Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

What do you think of this?

22 replies

PorkyMcPork · 04/02/2021 16:10

Maybe I am being unreasonable I honestly don't know...

Long story short I am a carrier of a genetic condition which can be passed to my children. I was unaware of this until we started TTC but it turns out it runs in my family. It doesn't affect my day to day life but there is a possibility of having a severely disabled child, it can also cause fertility issues, miscarriages and so on which we found out the hard way.

I am now about to have a baby who has been tested for the disability that can be caused by this condition and fortunately doesn't have it.

However, when asked if they could tell me if they are a carrier like me (there is nearly a 50:50 a chance they may or may not) they apparently can't tell me that as it's a breach of my babies confidentiality.

I'm a little upset about this as I would have liked to know so I can have a conversation with them when they are old enough to understand if they do indeed have the same condition and prepare them in a way in which I was not for the possibility.

It also would have been good to know if they aren't a carrier so we didn't have to needlessly have a potentially worrying conversation with them that they may or may not have this issue.

Obviously I understand my child may not want children in the future and that is and would be entirely their decision but I feel it only fair that they know about this possibility so they have the information if they do decide to have children (when an appropriate age).

I was wholly unprepared for the journey me and DH had to go on to get here and I really wish I'd have known earlier on.

Apparently they can ask for testing themselves if it becomes a problem if they ever TTC and have issues. I just think it would have been fairer to know one way or the other before that point I guess.

OP posts:
Original poster
PorkyMcPork · 04/02/2021 16:12

I appreciate there is nothing I can do by the way. Just wondering if others also felt it odd that this information is confidential from a babies parents?

OP posts:
SingingLoud · 04/02/2021 16:14

Are you in the UK?

What’s the condition?

Original poster
PorkyMcPork · 04/02/2021 16:16

I am.

It's a balanced translocation of chromosomes 11;22.

OP posts:
Original poster
PorkyMcPork · 04/02/2021 16:20

The condition it can potentially cause is called Emanuel syndrome.

OP posts:
TheChip · 04/02/2021 16:20

Thats extremely odd that they are withholding info from you about your baby due to confidentiality.

I'd of never believed that would have been possible. It makes perfect sense that you would want to discuss this with your child in the future.
What if healthcare becomes costly in the future and it costs a fortune to find out?
I'd honestly seek advice to see if they can actually legally withhold that from you.

rosiejaune · 04/02/2021 16:20

YABU because being a carrier doesn't affect their health, so you don't need to know in order to parent them. You can still explain they may have it, when they get older, so they can choose to find out or not before having a child.

[There is a different balanced translocation in my family.]

CaptainSirTomMooreismyhero · 04/02/2021 16:23

I think, when they are old enough, you can still have the talk and let them know they are potentially a carrier. They can then decide whether they wish to know or not and take/not take tests.

Original poster
PorkyMcPork · 04/02/2021 16:24

@rosiejaune

YABU because being a carrier doesn't affect their health, so you don't need to know in order to parent them. You can still explain they may have it, when they get older, so they can choose to find out or not before having a child.

[There is a different balanced translocation in my family.]

I appreciate I can still have the conversation with them and tell them they may have it (or not). And I will because I think it's only fair they know there is the potential they may be a carrier.

But I do feel it would have been more beneficial to actually know either way imo. Especially seen as we wouldn't even have to potentially worry them at all if they weren't a carrier.

OP posts:
Original poster
PorkyMcPork · 04/02/2021 16:25

@CaptainSirTomMooreismyhero

I think, when they are old enough, you can still have the talk and let them know they are potentially a carrier. They can then decide whether they wish to know or not and take/not take tests.
Yes we will of course do this still. Just seems a shame we can't tell them either way. Seems more worry inducing leaving it as a 'maybe, maybe not' to me.
OP posts:
rosiejaune · 04/02/2021 16:29

But they won't be capable of consenting to sex until they are also capable of consenting to their own medical treatment, so it's not something the parent needs to deal with, therefore potentially an unnecessary invasion of their privacy.

mrbensbaker · 04/02/2021 16:29

I can see why you think it's odd but what if they don't want to know? Once they know they can't unknow it so I think it's right in a way even though it does seem very odd.

Flowers and congrats on your pregnancy.

Original poster
PorkyMcPork · 04/02/2021 16:32

@mrbensbaker

I can see why you think it's odd but what if they don't want to know? Once they know they can't unknow it so I think it's right in a way even though it does seem very odd.

Flowers and congrats on your pregnancy.

So is this not the same as suggesting I shouldn't even tell them there is the possibility that they may have it because maybe they don't want to know that they may or may not?

I just don't think it's fair to not tell them about the possibility and as such it would have been good to be prepared with facts for them.

I can understand the point though about it not affecting their health and our parenting of them as such, I get it in one way I really do. Was just surprised.

And I guess I'm also feeling a little guilty at the potential I may have passed something unpleasant to my child.

OP posts:
WitchesBritchesPumpkinPants · 04/02/2021 16:33

Congratulations on your pregnancy! 💐

About not telling you, that's utterly fucking batshit.

Do they know now? Or would they have to wait until your baby is born to test them?

I'd be bloody surprised if they can legally withhold the information from you once you've had the baby snd I really cannot see how they can keep the information from you if they can find out when you're pregnant as they're not a person in their own right until they're born.

Honest to God's it's fucking ridiculous if there's a grain of truth in what they've said.

Original poster
PorkyMcPork · 04/02/2021 16:35

Do they know now? Or would they have to wait until your baby is born to test them?

Yes they do I believe. They tested babies chromosomes to check for the disability mentioned and I understand (although could be wrong) that this info would have also been included but they just don't release that as it's confidential.

She said they used to but now they don't.

I am part of groups for this condition and I know that they used to do this as a few of the ladies on there were told whether or not their children had inherited it (not recent though as it's obviously changed now).

OP posts:
Original poster
PorkyMcPork · 04/02/2021 16:37

My midwife obviously didn't know they don't release it either as she was the one who'd sent the request to the genetics team, she had suggested taking some cord blood to test if they didn't already have the results from the previous tests they'd done.

OP posts:
TaraR2020 · 04/02/2021 17:02

Bloody hell... I disagree this, as their parent you are absolutely entitled to know.

Congratulations your baby btw :)

TaraR2020 · 04/02/2021 17:04

Additionally, in law are they allowed to do this while baby is still in utero? I'd check tbh, without meaning to undermine any child's right to life and self determination, do their individual rights exist before birth?

I'm not certain?

OloBo · 04/02/2021 17:09

Are you in the UK? I have BT and my child before my diagnosis, I’m not allowed to know as they are now a person in their own right and have to wait until they are old enough to consent. My youngest, I was told with their CVS results if they are normal or BT, as at that point, they are considered just a part of the mother as such and no consent required. I would definitely push to try and get the info.

Original poster
PorkyMcPork · 04/02/2021 17:13

I am in the UK yes.

They are telling me they won't release the information as to whether they are a carrier of the BT from the CVS results, only whether or not they have the syndrome it can potentially cause.

I'll see if I can speak to someone else to check if that's right. Baby has not been born yet.

OP posts:
OloBo · 04/02/2021 17:17

I found something from one NHS trust that explained it...unfortunately, COVID is taking over search results on testing and consent. I’ll see if I can find it.

MustardMitt · 04/02/2021 17:28

Sounds fucking mental.

A baby is not able to consent to anything - that’s why their parents are the ones in charge and make decisions about teeth cleaning and stuff like that.

Congratulations on the incoming baby Flowers

mrbensbaker · 05/02/2021 21:56

So is this not the same as suggesting I shouldn't even tell them there is the possibility that they may have it because maybe they don't want to know that they may or may not?

I think you should prepare them for the possibility but I don't think you should be told whether they do or not because it's their decision if they want to know or not.

New posts on this thread. Refresh page
Swipe left for the next trending thread