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Original poster

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:
Joystir59 · 28/12/2021 16:06

So sorry you are going through this awful situation OP. I have no experience or advice but hope others will be along soon who can speak to your experience.

Artichokeleaves · 28/12/2021 16:13

I am so sorry Flowers

Cindie943811A · 28/12/2021 16:21

Not able to advise but sending you warm wishes. I hope your consultation is of positive help.

Cindie943811A · 28/12/2021 17:05

OP I have looked this condition up and am so sorry you are having to cope with this tragic situation. Do be kind to yourself and accept all the support that is offered. I have not experienced this but many years ago suffered something similar and understand the grief that you must be feeling. I felt that my body had somehow let me down, though rationally that wasn’t the case.
I understand that triploidy syndrome is just something that happens and that neither parent has any control/responsibility for what happened at conception.
You have every right to grieve and do not listen to those who may tell you to have another baby and forget this one.
Take care

Banoffeepie91 · 28/12/2021 17:51

I’m so sorry you’re going through this. My son didn’t have this condition but he did have other problems which meant we made the heartbreaking decision to TFMR.
He was born in July and I still miss him every day but it has got easier.
The charity ARC have been really amazing throughout this whole awful process so I would recommend having a look on their website and contacting them if you need to.
Happy to chat or answer questions if you want to speak to someone who understands.
Xx

Original poster
prayingforaxmasmiracle · 28/12/2021 18:28

Thank you all for your nice words & support. It means the world people have just responded as i am going out of my mind.

It's a situation where you want to reach out to anyone who may experienced something similar as right now I just feel so lost and heartbroken.

I think for me I'm scared of the next steps... @Banoffeepie91 I'm not sure if you have any advice & I'm so so sorry for your loss. I want to remember this baby, I do want to try again but this baby has meant the world to me and I just can't get my head around it all. Just doesn't seem fair.

People are acting like I've already lost the baby and it's so difficult for me as my baby heart is still beating and it's still growing.

Thanks again everyone xx

OP posts:
Banoffeepie91 · 28/12/2021 18:59

I completely understand how you feel. We had a week between appointments where we had time to get our heads round what was happening and although it felt awful that he was still alive in my tummy we needed that time.
My advice would be to do what is right for you. No one else can tell you what is right because it’s not their baby and unless they have been in the same situation no one can really understand.
Speak to your doctors as well, they are there to support you.

We’re still not even thinking about trying again even though our son was born nearly 6 months ago. He meant the world to us and was a very much wanted IVF baby.
It is completely unfair and I still feel that now.

We spent some time with our son after he was born and read him a story. It’s the best and worst moment of my life but I’m so pleased we had this time with him. We have pictures and hand and footprints for him and were able to make some lovely memories.
They will always be your baby and you will never ever forget them. Just because they aren’t going to be with you doesn’t mean they can’t be a part of your life.

TimeForTheChristmasTree · 28/12/2021 19:02

Best wishes OP, I hope others come along soon and offer advice and support. Take care xx

Original poster
prayingforaxmasmiracle · 28/12/2021 19:20

Thank you @Banoffeepie91 for even going into so much detail. I appreciate it's so hard for you to even talk about it, let alone explain it to me but I'm grateful for you sharing it as I feel like I don't know anyone else who I can fully relate too.

It sounds silly but if I have a weeks wait, I will be 15/16 weeks but don't know at that stage if they give you anything for remembrance or what you can do? Think we are going to ask for the sex tomorrow as well as that will be in the chromosome report.

I'm guessing the consultant will talk through more with me tomorrow at the appointment.

Thank you again xxx

OP posts:
Banoffeepie91 · 28/12/2021 19:37

My son was born at 17 weeks but from the PM report he was actually the size of a 16 week baby. We got hand and footprints at that age and the hospital gave us a lovely memory box. We were also able to have a funeral for him and have his ashes at home.
Having the sex really helped us as well as it meant we were able to give him a name.
I hope your appointment goes ok tomorrow. Happy to answer any questions you have.
Xx

Original poster
prayingforaxmasmiracle · 28/12/2021 19:48

Thank you again @Banoffeepie91 I really hope I'm able to get something similar to remember them even though I will never ever forget.

Thank you, I'm really nervous for the appointment. I'm going to write some questions down tonight, think there's a lot I need to ask and probably just going to get myself all upset tomorrow and probably not say a word. I can't stop crying.

Xx

OP posts:
PatchworkElmer · 28/12/2021 19:56

I have nothing to add but I’m so sorry. Will be thinking of you and your little one.

Banoffeepie91 · 28/12/2021 19:57

Writing down questions is good, I was always quite emotional at appointments so it was really helpful to have things written down. Also don’t be afraid to ask anything, no question is stupid. Also find out if there is someone you can contact if you have any questions after.
I will be thinking of you tomorrow. Let me know how it goes. Xx

Original poster
prayingforaxmasmiracle · 28/12/2021 19:57

Thank you for your nice words, means so much xx

OP posts:
Original poster
prayingforaxmasmiracle · 28/12/2021 19:58

Thanks @Banoffeepie91 I will let you know. I'm new to this but will work out how to message somehow. Thank you for your support.

I'm the same, I just cry all the time especially at the appointments. I don't seem to take anything in. Your right I'm going to ask everything that I can think of.

Thanks again, I'm dreading it to be honest. It's at 3:30 xx

OP posts:
BabyOnBoard90 · 28/12/2021 20:08

Sorry for your unfortunate news. It can be heartbreaking as you quickly build an attachment so quickly.

My advice would be to move forward with the necessary medical procedures as swiftly as possible. Take some comfort that it was caught early and that statistically speaking it is quite unlikely you'll deal with this again.

Sorry again, and best of luck

jmm499 · 28/12/2021 23:23

I’m so sorry @prayingforaxmasmiracle, my heart breaks for you. I’m thinking of you ❤️

We had worrying news at our 12 week scan 2 years ago on Christmas Eve and it was hell. I know there’s no better time to get such devastating news but it was such an awful time and delays in appointments with bank holidays etc. Time felt like it stood still :( Sending you and your baby so much love xxx

Original poster
prayingforaxmasmiracle · 29/12/2021 10:32

@jmm499 I'm so sorry you got bad news too. Christmas hasn't been the same but no day would of been the same whatever day we got
This news.

Thank you for thinking of me.

Just keep waking up thinking it's all a really horrible dream then reality hits

Xxx

OP posts:
jmm499 · 29/12/2021 10:37

@prayingforaxmasmiracle really feel for you and holding you in my heart ❤️ By some miracle things turned out ok for us but it was a terrible time of waiting, lots of tests and caused a lot of trauma so I can’t imagine how you must be feeling and what you’re going through 😢💔 I’m so sorry.

Big hugs xxxx

Original poster
prayingforaxmasmiracle · 29/12/2021 10:46

@jmm499 I'm really glad you got a happy ending. I genuinely believed that mine would be and all the worrying was for nothing from the biopsies and scans. You never believe things happen to you.

I'm just heartbroken.

Xx

OP posts:
Banoffeepie91 · 29/12/2021 11:11

Nearly 6 months on it still doesn’t seem real that any of it ever happened. While we were waiting for tests and scans I kept hoping that on the next scan they would just say that everything was magically ok again.
I don’t think it was until we got our sons PM report after he was born that I really believed he had all the problems that he did.

I’ve been thinking of you today. Xx

jmm499 · 29/12/2021 11:13

So heartbreaking - I felt like I was living in a dream (nightmare) - utter disbelief that you’re having to even think about such an devastating scenario. It feels so very cruel, I’m so sad that it has turned out this way for you :(

Do you have good support around you? Xxx

Original poster
prayingforaxmasmiracle · 29/12/2021 11:14

@Banoffeepie91 that's what I keep thinking like what if they have our results mixed up like surely they can do something!

I don't think it will ever feel real.

Thank you, the appointment is at 3:30 so just trying to sort myself out before hand.

Thank you again for chatting to me about it xxx

OP posts:
hidetheicicles · 29/12/2021 21:23

So sorry you are going through this OP. I had a TFMR last month at 14 weeks after getting an Edwards diagnosis. It was so hard to process and I was in shock for much of the time, my body just switched off to get through it.

I found that I wanted to talk about it but people who hadn’t been through it didn’t understand that and didn’t know what to say - even my closest friends didn’t really understand how to support us.

I hope you were able to get some answers at your appointment. It is such a bleak and stressful and overwhelming thing to go through and it’s especially hard on the mother so please be kind to yourself, take all the time you need to make decisions and do whatever you need to get through it.

Please do let us know how you get on and I will be thinking of you. xxx

Original poster
prayingforaxmasmiracle · 29/12/2021 23:08

Thank you @hidetheicicles for your message and I'm so sorry for your loss.

It's truly the most difficult time.

We found today our baby is a little boy. Just makes it even more real.

I won't be going in for another week so going to be even further along, I'm going to do something for his memory to give me comfort in all of this.

I know time is a healer and one day I will be ok just right now feels like my world is falling apart xxx

OP posts: