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Triploidy Syndrome - heartbroken

36 replies

prayingforaxmasmiracle · 28/12/2021 16:03

Hi,

I found out on Xmas eve from the results of a CVS that my baby has triploidy syndrome. Heartbroken doesn't come close. I am nearly 14 weeks and back into speak to consultant tomorrow.

It doesn't seem real... I can't believe this is happening to us. Everything looked perfect.

Has this happened to anyone before? I don't want to let go but I know I don't have any other option?

:(

OP posts:
hidetheicicles · 29/12/2021 23:46

Of course and it’s okay to feel that way, you’ve had devastating news. Yes, you will feel better at some point in the future but in the meantime whatever you feel is what you need to feel. x

Banoffeepie91 · 30/12/2021 07:03

@prayingforaxmasmiracle I was thinking of you yesterday. I’m sorry it’s not going to be for another week. I found the last week with my son knowing we were going to say goodbye really hard but it did help me prepare and look into things I might want to do to remember him.
I’m pleased you’ve found out that he is a little boy. It really helped me.
Some things that you might want to think about over the next week are do you want to meet your little boy once he’s born. Also is there anything you want him to have. We bought our son a little cuddly toy lamb and have pictures of him with it. We have the lamb at home with us now and it helps us feel close to him when we are sad.
Some support sites I also found really helpful are the ARC website, they also have a forum you can join once your little one is born so you are able to talk to other mums who have been through the same thing.
There’s also a site called TFMRmamas, it’s run by a lovely lady called Emma who went through the same just over a year ago and that has helped me too.
If you need someone to talk to feel free to message me privately.
Xx

Jb9191 · 30/12/2021 08:58

Hi OP,

I wasn’t a member but I had to sign up to comment on your post. We are going through the exact same thing right now. We found out on Boxing Day that our little boy has Triploidy.

We went in for our consultant meeting yesterday to set of the next steps. We know what we have to do but it doesn’t make the process any easier. It’s a difficult time and the only thing getting us through this is the support from our family and friends.

We have to try and see the light through the darkness in this situation, which right now seems impossible but we will eventually come to understand and accept what has happened.

All we wanted was a child and it feels like after being told everything was fine, all was ripped away from us in a matter of weeks.

Maybe we can both find comfort In that we are going through this at the same time and if you do feel the need to talk, then please do feel free to direct message me.

abouquetofsharpenedpencils · 30/12/2021 09:30

Sending strength to you OP
X

Banoffeepie91 · 30/12/2021 09:56

Aww @Jb9191 I’m so sorry you are going through the same as well. Happy for you to message me if you want to talk to someone who understands. I can’t believe it’s been 6 months since we said goodbye to our little boy. It feels like only yesterday but I want to reassure you that it does get easier even when it feels like it won’t.

LizzieBet14 · 30/12/2021 11:38

Sending love ❤️ xx

Hairyfriend · 30/12/2021 11:50

Sorry you are going through this OP Flowers. My 1st pregnancy had patau syndrome. The prognosis is similar to triploidy syndrome. I found out earlier, as paid for the NIPT at 11 weeks. For various reasons, I chose TFMR- which was 18th Dec a few years ago. Ours was also a boy.

Afterwards, DH and I were given genetic testing and were clear. We were told it was a one off, and likely down to my older age- I was 38 then. Sorry if TMI, but one thing I hadn't considered was what we wanted to happen to the baby after the PM. We were told we could pay for a private funeral or cremation, bring the baby home to bury ourselves or it could have a group cremation organised by the hospital at our local cemetery.

Remember that this isn't your fault and you aren't alone. If you have any questions at all, please just ask.

prayingforaxmasmiracle · 30/12/2021 15:10

@Hairyfriend I'm so sorry for your loss and what you went through.

I'm glad you got the all clear, I did ask regarding further testing but the explained that with triploidy it's nothing we have carried it's just one of those things that happened.

Yeah I'm thinking what to do with the next steps, me and my boyfriend have been talking about it today xxx

OP posts:
BabyOnBoard90 · 02/01/2022 12:34

[quote prayingforaxmasmiracle]@Hairyfriend I'm so sorry for your loss and what you went through.

I'm glad you got the all clear, I did ask regarding further testing but the explained that with triploidy it's nothing we have carried it's just one of those things that happened.

Yeah I'm thinking what to do with the next steps, me and my boyfriend have been talking about it today xxx[/quote]
Amniocentesis also needed to confirm any issues aren't confined to the placenta.

But if the scan is showing abnormalities as well then unfortunately that's a confirmatory diagnosis.

Wish you and your partner strength

k12345 · 02/01/2022 21:27

I don't normally post, but couldn't leave this post. I am so sorry that you are going through this. It is not something that you would wish in anybody.

We had a baby that was diagnosed with Triploidy at 18weeks, although from the 12 week scan we knew something was very wrong and we were referred to fetal medicine. After a CVS test we decided to have a TFMR. ARC were very helpful and kind. I decided to have a medical termination rather than physically giving birth, that was the right decision for us.

The care we received was very good and we had a genetics appointment at UCLH but were told that it was a random genetic mix up and not something that was likely to happen again. We had to wait to try again, as some triploidy pregnancies can be partial molar, but a year later to the day of the TMFR I gave birth to a gorgeous healthy boy.

It is not an experience you would wish on anybody but there is always hope. I can't say I enjoyed being pregnant again and every scan was anxiety ridden but there is light. If you have my questions, please do ask.
X

BlossomingSlowly · 04/01/2022 20:00

I'm so sorry, OP ❤️

Miranda Burns (a radio presenter for capital) and her partner lost a baby to Triplody last year. They have a podcast (Test Tube Baby Pod) where they try and remain positive whilst talking about the hard bits. A trigger warning though, they have recently had a baby via IVF, so recent episodes might be a hard listen. Thought it might be helpful for you to listen to someone who's been through the same, though. Sending so much love to you Thanks

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