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.

If she's no more likely than the rest of the population to have her own baby with this condition then I would argue that she doesn't need to know the specifics. Its not helpful unless she needs additional screening or monitoring as she starts her own family. If she asks specifically for the name of the condition and further details then be free to tell her but it might cause her undue stress during pregnancy or put her off having children at all.

I'm sorry you had this awful experience.

Oh gosh I understand this. I have a dd who's only 6 but whilst trying for her I had a stillborn with PFFD then carried another baby into the second trimester with Triploidy.

She knows about our stillborn as he has a grave we visit but only in an age appropriate way e.g. I had a baby that was really poorly. She doesn't know about my two miscarriages of course. I suspect the thought of her getting pregnant will trigger a lot of anxiety in me incase she's destined for the same fate even though we were told our losses were just bad luck. We never had genetic testing. It would have been the next step had I miscarried my dd as they were reluctant to do it due to costs. But everything they said made sense, the conditions weren't linked.

If your DD knows the basics I'd maybe tell her you're comfortable talking about it if she ever wants to then leave the ball in her court.

I think you need to tell her fairly soon. My reasoning is that if she is aware that there was some kind of genetic issue, then the midwife will ask what it was in case eg it is an x-linked disorder. DD will then be asked to find out from you when she is full of pregnancy hormones and feeling very sensitive and vulnerable.
Better to tell her before she gets pregnant. I'm sure there are charities out there who can advise on how best to do this.

This must be so hard for you, stirring up those feelings. I am so sorry you lost your beloved son. If my understanding is correct this condition is due to an error in the genetic code not inherited at all, so your DD should be fine. But it is upto you whether you want to tell her about her brother’s condition. I can totally understand why you want to protect her. I am so sorry this happened to you, hopefully you had counselling at the time, but if you feel it would help, please seek support, it’s not too late OP.

Dear @ByLimeAnt

I’m so sorry you went through this trauma. It sounds like one of the most difficult events a mother can experience. And some of the words said to you at the time were not good ❤️
I echo others who’ve said that some form of therapy could be really helpful again as when your DD gets pregnant, it will be so useful to have someone to talk to and help you process the memories it brings up.

If your DD remembers the birth of your son, saw the effect on you afterwards and understands your boy died from a genetic anomaly - it’s good to tell her as soon as possible.
I think writing her a letter as others have suggested is a good idea. Keeping it as calm and factual as possible is the main thing. It’s up to her if she chooses to tell her midwife or has more in-depth tests privately whilst she is pregnant.

I hope you find some peace OP and I wish your daughter a happy and healthy pregnancy when it happens and I hope you enjoy your GC and this also helps you xx

This sounds like it was an awful, awful time for you, and I can see why thinking about your daughter starting a family could be very triggering for you.

But I think you need to find ways to process this yourself away from your daughter. There's so much to be worried about anyway regarding pregnancy, I don't see how this would be in any way beneficial to her. She already knows the basics outline of what happened to you - if she needs/wants to know any further medical details, she'll ask.

I’m so very sorry for your loss OP. I had to have a TFMR 2.5 years ago and it’s the most traumatic experience of my life and still impacts me every single day. Sadly it was my only pregnancy.

I think you should let your daughter know what the condition was so she can tell her midwife. I don’t believe your son’s specific condition is inherited but it’s important your daughter understands that so she can feel reassured.

You know your DD best OP.
Mine would hate to be told this as she would definitely focus on the negatives and it would risk causing worry and anxiety.
I imagine seeing her pregnant has been very triggering for you.

It’s really important to know whether the T13 was passed on genetically or not. Most likely it was a random occurrence, in which case it has no effect on your daughter’s chances of conceiving a baby with the same condition. Did you and the baby’s dad have genetic testing to see if you carry the faulty genes?

I say this as someone who lost a dd to a genetic condition and had a tfmr for T21 in december. When I had my tfmr, the bereavement midwife told me in 15 years she has seen this happen due to faulty inherited genes once, and usually has one person a day with T13, 18 or 21.

I think this approach is best.

DH's sister died aged 11 from kidney failure. Because he was only 8 at the time, he didn't know what caused the kidney failure. When we got married his mother talked about it to me and said that, as far as anyone knew, it was just bad luck that his sister had been born with faulty kidneys and it wasn't genetic. I found that reassuring.

I'm so sorry that you had to go through such a terrible experience. As others have said, counselling might help.

Just wanted to respond to this as I also have a sibling with a severe disability. As I’ve got older I’ve realised how much it has shaped my life and the way I approach things and respond to things. It’s really good that you’re getting therapy, I realise now that it’s probably something I should have done a long time ago. I hope it’s helpful to you in processing your feelings.

Thanks for the response. I knew it was causing problems and when I said it out loud I think I even shocked the therapist. If you haven’t watched Young Sheldon yet I would recommend, as it gave me some
context on my conflicting feeling about my childhood. Xxx

Thats why I think the OP should get some
help. This is a confronting subject in a weirdly benign way i.e not violence or abuse and it makes people very uncomfortable.

I’m so sorry this happened to you, my son was still born at 22 weeks 6 days with trisomy 18 (Edwards syndrome) and I was so worried to tell people what it was as of course they will google it and that in itself is extremely distressing. We kept his little face to ourselves and only the grandparents who actually visited when he was born have ever seen him. I think telling her the situation is hard because I think nearly everyone I know would instinctively google it. Every time I’ve been through the midwife admission forms and appointments they asked about any losses including family so I do think she needs to know. It may just mean they give her extra appointments. This must be a horrible time for you, and bringing up emotions with can be horrendous to deal with. So inbox alway open if you need an extra listening ear x

My understanding is that, while Patau is not strictly inherited per se, there could be a greater risk in families prone to translocations (and some translocations are completely asymptomatic). Therefore, I would think this is very relevant information for any children you have.

She would be tested for this routinely in pregnancy. It may cause unnecessary stress if she is already pregnant, but if she isn't at the moment I'd tell her. I'm so sorry you had to go through that, OP. Sending you love and strength.

https://www.nhs.uk/conditions/pataus-syndrome/

I'm sorry you went through this. I had a late term stillbirth with my second baby, and whilst there was no cause of death found at post mortem, I had a group of antibodies in my blood that caused issues in my subsequent pregnancies. So when my eldest had her 1st, I simply showed her all the paperwork I'd kept on it and she was able to tell the MW at her booking appointment. Thankfully she had no issues.

I think you should tell her. Usually it's just a freak accident, a one off occurance that usually spontaneously terminates and she is unlikely to have a baby with it, much less carry one to term, but someone has to be that outlier and I wouldn't want her blindsided by it if it does happen.

I assume your poor baby had cyclopia or similar that arises from full trisomy 13 and that is a very hard thing to see. I took an interest in it for a while so the pictures no longer shock me but can't imagine having to see it in my own child. I'm so sorry for your loss and the trauma you suffered.

I agree with this, I don't see any benefit in telling her.

I'm sorry you went through this OP and I agree with PPs that therapy is really helpful in processing the trauma.

I’m sorry for your loss 💐 I would tell her to go for a private Harmony test, they can do the genetic screening in a few days and only need blood tests. Just put your mind at rest, if you do it via the NHS it’s not as accurate results wise and can take a few weeks to get the results.

I would tell her in a factual way, by letter or text, if you find it difficult to talk about.

She will need it for her family history but I also think it will help her understand your feelings during her pregnancy and be able to manage that.

Some people also refuse the testing. My understanding is if you don't do it at the right time it can be harder to do later without risking the baby which becomes a very difficult decision. Knowing your experience may help her make that decision.

I am not sure why you need to tell her at this point? She will be aware genetic conditions are a possibility but trisomies are not inherited so she is not at high risk because of your experience. All you will be doing is adding to her worry. This is really about your own experience and your own concerns and I think it might be better to speak to a counsellor about those.

There's a useful book called 'The Age of Diagnosis' by Suzanne O'Sullivan. It questions the extent to which so-called non-invasive prenatal testing is a good thing.

That is not how trisomies work. You normally have two copies of each chromosome in every cell. In trisomies you have three. You can’t be a ‘carrier’ of a trisomy - you either have three in which case you have the symptoms of it, or you don’t.

The benefits would be to put the DD’s mind at rest. She already knows she had a sibling with a severe genetic disorder. She needs to know what it was and any implications. The midwife will ask, so she needs to have that information to hand.

All that would need to be said if ‘I lost a child to Patau’s’. No more detail is necessary.