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.

I would tell her the condition, but not the details of how bad it was. Just that it wasn't compatible with survival, and that the genetic councillor's didn't mention that your grandchildren would have a higher risk but to mention it to the midwife just incase.

It might actually help allay your daughter’s fears. Currently she knows you needed a tfmr for a genetic anomaly. She may assume this is hereditary. Letting her know it is something which can happen to anyone and is not passed down would help her enormously.

If she asks, tell her the truth.

Agreed.

I am so sorry for your loss. I too had a Tfmr some years ago and being very honest, you post has made me realise I still haven’t fully dealt with it. Quite simply the worst experience of my life.
Different condition, we did have genetic testing and the outcome was ‘it was just one of those things’. I went to on to have further healthy pregnancies and did receive additional testing through those pregnancies - mainly to deal with my stress levels after all was confirmed ok in the early part of pregnancy. After my first experience, I never enjoyed being pregnant and always thought something would go wrong.

My children are too young to be thinking about their own families just yet, but I will write a letter factually explaining it that they could give to a medical professional for their files. If they get an early scan / monitoring as a result/ extra monitoring, then great.

When we went for genetic testing after the first loss, my PIL at this stage gave us a letter detailing an inheritable condition that was present in my DH family. We had no idea, As it happened, it was not linked to our specific situation but my PIL only disclosed it knowing we were going for genetic testing. I was both hurt and furious that they would knowingly withhold such important information.

I would tell her, because she may be afraid of asking you, but really kind of feel that she needs to know. You could simply say that he had an extra copy of chromosome 13, Patau’s syndrome and that you were told he wouldn’t survive birth so had a tfmr. I think I would leave out any more details than that, unless she asks you, in which case give her more information.

Hello love, what an awful trauma for you. I’m so sorry.

Gently though, I don’t think this needs to be the trauma for your daughter that you are (understandly) seeing it as through your own lens. I think you can factually say that your baby had Patau’s and that she might want to mention it to the midwife for reassurance but that as far as you’re aware, there is no increased risk to her babies, and then leave it there.

Have you had any help to come to terms with your trauma?

In that case I’m confused as to why DH and I had genetic testing to see if T21 came from us.

Yes that is strange.

I think they might be looking for mosaic downs?

Not in the slightest bit strange. We were also tested when our daughter was diagnosed with trisomy 18, because in rare cases it is not a random occurrence but caused by a translocation. I know a family who have had two sons with T18 due to a translocation however it is extremely rare.

Thanks, that is interesting. I found a good description here. So not strictly speaking a trisomy as it is the genetic material not whole chromosome that is duplicated. But basically in the parent part one copy of chromosome 21 might get swapped with eg part of one copy chromosome 14 but the parent will still have the correct number of genes just on the wrong chromosomes. But the offspring might then get one copy if chromosome 21 from one parent and both the ‘correct’ version of chromosome 21 and the ‘incorrect’ version of 14 from the other parent giving three sets of genetic material.

https://www.stanfordchildrens.org/en/topic/default?id=translocation-down-syndrome-90-P02153

Thank you everyone for all of your kind words. It meant a lot. My condolences to those who have been through similar.

She doesn't know I had a TFMR (it wasn't age appropriate at that time. I told her the baby was very sick and not going to live. I took the medication the day before but his heartbeat was still present when I went into labour so I just told her he died before birth). Though she might well have worked out for herself before now.

Some really good advice here, thank you. I think I'm just going to write down "trisomy 13, genetic counselling didn't show any likelihood of inherited factor" and leave it there.

Again, thank you all.

That sounds perfect OP. I hope everything goes smoothly for DD. Hugs to you