Telling adult daughter diagnosis of deceased brother

[ByLimeAnt]

I had a Tfmr 10 years ago. My beloved son had trisomy 13 (Patau). I remember the fetal medicine doctor telling me she was shocked that I hadn't miscarried as unfortunately his was very severe. I can't even talk about what I saw the day he was born.

Before the amnio I googled the condition and itwas horrific. Since that day I have wanted to scream at people who say "Step away from Google ". Becsuse the reality was so very much worse. The midwife took him away and said "I see why they didn't want you to see him".

My adult daughter is likely to start a family soon. She knows he had a genetic anomaly but not the diagnosis itself. I don't want to tell her because I don't want her to be upset. But I will tell her as it's important she tells the midwife. We did have genetic counselling and were essentially told it was just really bad luck, though I had a slightly higher chance of another trisomy pregnancy in the future. Not my children if I recall though.

How do I handle this? It broke my heart and she knows that.

Tell her the truth. More information and knowledge can help her. She may well be upset, but not as upset as you keeping this from her and not giving her full knowledge. She’ll worry anyway because of the genetic abnormality. Be truthful.

Are you worried about her knowing, or about how to / the process of telling her? I can understand it must be very difficult for you to talk about and you might not want her to see that. Could you write her a letter if so?

From what you’ve written, I gather it was a dreadful fluke rather than an inherited disorder. In that case, your daughter’s children won’t be affected. Nonetheless, you are right to talk to her about what happened. I know it’s very painful for you. Sending love and strength.

I’m so sorry this happened to you. It seems the chances of it happening to your daughter are really low, luckily. I would tell her the truth but probably without detail.
I hope you’ve had people to talk to about this for your own sake x

Op you really need to have counselling and to process what you saw. It must be so deeply distressing to live with such painful and traumatic memories.

A simple letter to your dd outlining what happened factually without detail so she can pass it to her midwife would suffice,

I expect your DD’s concern will be for your terrible loss op, and what you have been through. You must be truthful as your dd will be able to be monitored much more closely, and this will prove comforting for all of you in the long run.

I'm so sorry that happened op.

However, I don't think Patau syndrome is inherited so I don't think your daughter's baby is any more likely to have it than another pregnant mum's. So I'm not sure if it's necessary to tell her midwife.

That’s so hard there is no option with this one
it must be so painful and your instinct to protect your daughter but you have to tell her before she starts trying to for a family
she needs this info before she gets pregnant

she’s already aware there was a disorder so it won’t be a total shock

also be honest with her tell her it’s extremely painful and you don’t want discuss it any further

please please look after yourself this is going to open it all up again

Tell her the full truth. She deserves to know and to take measures of testing etc.
She could be upset but possibly not as upset as you because she is one step removed where as you were in the thick of it.

I'm sorry OP, I had a tfmr a few years ago so know how devastating it can be. I don't think you need to go into detail, if seems from you post your dd knows you had the tfmr? If so, then all you need to do is tell her it was Patau's and that your don't think it was inherited but she should mention it to her midwife just in case.

My tfmr wasn't due to a genetic disorder and the problem he had was just just really bad luck - and that's pretty much all I've told my sister who's ttc. To me it was important she knew so she knew it was unlikely to happen to her/it wasn't something we inherited.

Sending you love ❤️

yes please tell her. My best friend found out she had a brother who was stillborn when she was pregnant with her DD as they wanted family history. It was quite a shock, her parents had never mentioned it. Very important for her to know the medical history. Sounds very upsetting, hope you’re ok OP.

The midwife will still be interested and note it down. My aunt has T21 and the midwife recorded that at booking. I said to her I’m not sure if it was relevant (because like you say, it’s not inherited) and she said that it was. I’m not sure what she did with the information though.

I am so sorry that you lost your baby. Have you thought about speaking to ARC? They seem to have access to a lot of knowledge about three most common trisomys, and may be able to tell you more about whether there is higher risk that it can be passed down through generations. My baby girl had Edward’s syndrome and I had a TMFR too. It’s heartbreaking. My understanding at the time was that it’s just an awful stoke of bad luck.

If I were you, I’d tell her the diagnosis, in as low key a way as possible, but before she gets pregnant so she’s not having to deal with it alongside all the other emotions of pregnancy. She will know from sad experience that pregnancies don’t always go to plan and she can make her own choices about what, if any, additional tests to have. She might well Google it, but as you say yourself, the information online is nowhere near as awful as the reality.

I’m sorry that happened to you, it must have been an incredibly difficult thing to go through. Like a PP, I would suggest looking into counselling to process the trauma as it’s clearly still very raw for you.

It’s too late to take action now but what the midwife said was extremely unprofessional. She could and should have handled it much more sensitively.

It’s not clear from me why you feel you need to tell your daughter now, if it was just a random fluke and not something she could have inherited? I’m not saying it’s not a good idea to tell her as I think it would probably bring you closer and it sounds like you could benefit from sharing and talking with family. But I wouldn’t necessarily link it to her pregnancy and I’d be clear that as you understand it, the risks aren’t any greater for her.

I am not entirely sure why your daughter must know *now. I would echo the earlier ideas of therapy either way. It sounds like it was horrific. I would be worried about passing on that unprocessed trauma to your daughter at a time that she is already vulnerable, despite your son's diagnosis having no bearing on her pregnancy odds.

Sorry for your loss.

I’m so sorry this happened to you. I would mention it to your daughter but in a reassuring way — as in, “in case you’re worried about it, what happened to your brother was Patau’s syndrome and it’s a completely random tragedy, so don’t be afraid it will affect you when you have children.”

I am so sorry you had to experience this. Are you in counselling? Your DD ttc seems to have lead to some resurfacing. So even if you’ve previously been in therapy, now might be the time to start again.
Be kind to yourself and give yourself grace! 💐

PP’s suggestion of writing a factual letter (whilst also stating that this was incredibly traumatic and painful for you and - if that is indeed the case - do not want to talk about it) is a good idea imo.

It will give your daughter the information she needs to make informed choices and it will relieve you from wondering whether you should tell her / should have told her etc.

@ByLimeAnt

What you went through was so incredibly traumatic it makes complete sense that of course you wouldn’t want anyone else to experience it.

Pregnancy and the risk of disability/conditions is unbelievably stressful, that for a person who hasn’t experienced something like might find it hard to manage your emotions

My younger brother has a profound disability, and growing up with this has made me terrified of having children in case they are disabled. It is only very recently that I have admitted this to myself and anyone else (the psychologist). The emotional pain and shame in admitting that this has been a question my entire life was overwhelming so I have a lot of empathy with your position.

Be kind to yourself and if possible get some professional support if that is available through your GP and EAP.

XXX

So sorry for your very sad loss. You've been through something awful.

I can understand how your daughter's planning a family could bring the trauma of this to the forefront of her mind, but gently, your anguish and worry over this is about you, not her. All she needs to know in this context is that you had a baby with T13. You need just say those words. But it sounds like you can't imagine communicating this to her without including a description of this horrendous experience you had, and that suggests that to you this trauma is very fresh and overwhelming.

If you haven't had therapy I would really recommend it, because it sounds like your trauma is already informing your response to her, and if she does get pregnant it's going to be really hard for both of you to enjoy as you should.

Your daughter will be screened routinely for T13 as standard at 12 week and could for go private diagnosis even earlier if she chooses. But she's unlikely to be at any more risk of having a baby with a trisomy than anybody else.

Tbh I don’t think you need to tell her. It’s not inherited but a spontaneous mutation. Why tell her I don’t see why she needs to know now.

I would agree with this. She doesn't need to know any more than that, and with kindness, the desire or need to share any more than that would be about you and not her.

Surely the important information for your daughter is that this is not an inherited disorder? That and the name of the condition are all she needs to know. She knows something happened, so knowing it was rare and bad luck, not heritable are the pertinent points.

A friend of mine had the exact same situation some years ago, though with her it was much more complex as she was carrying twins at the time - one had trisomy 13 - the other was fine. Her trisomy baby had multiple severe issues - all the horrific things these babies can have - the other was healthy and well. She was advised to have the trisomy baby terminated because it was risking the life of the healthy twin. It was a terrible time for her as they were both much wanted babies. However it was made easier for her knowing that the trisomy baby had no chance of life after birth. She took the advice and had the termination.
She went on to deliver a healthy baby who is now in secondary school, and doing well - and is an absolute delight to be with.
The medics - and she had special genetic counselling - all advised it was a random event possibly caused by her age (she was late 30s at the time) and not to worry about it as it was unlikely to happen again and wasn’t heredity - more more to do with her age as her stock of eggs was running low.
she went in to have a second healthy child.
I think the fact that one twin was fine shows just how random this situation is.

I asked her if she would tell her children and she said no - it was a random event and not heredity so nothing for them to worry about.
I hope this helps.

Whilst her daughter is highly unlikely to have a baby with Patau, it is important that her midwife and obstetrician know about it. As with all genetic disorders there is a risk all but extremely low in this case that it can be inherited! I’m not sure why you don’t think it would be necessary to disclose this?

Where is your evidence the mid wife or ob needs to know?

The daughter will have all the usual screening for genetic issues. So the midwife does not need to know. it’s not going to change anything except heighten daughters anxiety if they are that way inclined.

you can share if you like but it’s not necessary!