Post termination for medical reasons support thread?

[whyhastherumgone]

Hi all, sorry if this is the wrong place - just wondered if a thread existed already [had a look but can only find old ones] - if so can someone direct me to it?
If not, does anybody else want a support thread?
We're having to undergo genetic testing before we try again, so would be good to have a space to talk :)

[Treaclepie19]

KTD27 thank you.
I've taken photos of our son with bump earlier and I'm just trying to enjoy the kicks tonight before the injection tomorrow which feels horrendous.
I have so much guilt.

[KTD27]

Oh treacle. I’m so very sorry getting through it is just a question of putting one foot in front of the other. It’s without words to describe really. And honestly a bit of a blur in my memory I think I just detached from myself.
Im thinking of you

[Treaclepie19]

I know this thread isn't posted on much but thought I'd chance it anyway.
We're having a tfmr Friday. We have to go in tomorrow for the injection.
I'm finding it really tough. I can feel him kicking and know tomorrow it will stop.
How the hell do you get through this?
Lots of love to you all xxx

[KTD27]

I just wanted to say I’m now say watching my glorious little girl kick and try desperately to roll herself over as I type. There can be sunshine after the rain to everyone

[Jubilee2012]

I am so sorry to hear of all of your losses

We had a TFMR earlier this year. I am still hugely struggling to come to terms with this and am dreading Christmas, thinking that I should have my newborn baby with me. We are trying again but it has not happened and I am feeling pretty hopeless at the moment. Whilst I would not wish what I have gone through on anyone, it is nice to know that I am not completely alone

[Funkypuzzle]

Just to add a little message of hope.
I had a TFMR in 2016 after a +vet Harmony for T21. The trauma put me off trying again. I decided I’d be happy with my lot of 2 beautiful boys. But this summer age 41 I became intensely broody again and fell pregnant very quickly. I’ve just received my Panorama results which were negative for all trisomys. My situation was made easier by fact that Trisomys are mostly sporadic not genetic although they are linked with age.
But I just wanted to share a story of a positive outcome post TFMR.
I’m sorry to hear of the losses on this thread and sincerely hope that you are all blessed with healthy babies very soon.

💐⭐️💐⭐️

[CyclingFanGirl]

Morning @MorganM16. I have sent you a PM.

[ANewHope18]

Morgan, I'm really sorry that you're going through this.

We lost our baby following a diagnosis of Edward's syndrome shortly after the dating scan and we chose tfmr at 13 weeks. I can't imagine being in your position so late on.

I second the recommendation of ARC, I have been in touch with them via email and they are very supportive. They also provided contact names and numbers if I wanted to speak to someone in person.

I'm thinking of you and sending you hugs, please be kind to yourselves xx

[MorganM16]

I’m so sorry that you have also been through a horrible ordeal 😔 could I ask you a personal question? Did you have to give birth still? I don’t know how anybody could make it through such a horrific experience. I really admire your advice so thankyou @CyclingFanGirl

[CyclingFanGirl]

Hi @MorganM16,
I really didn't want to read and run. I have no advice to offer, only that both options are horribly hard and ultimately you can only follow your own heart.

We chose a termination at 21 weeks after being told that as well as a severe heart defect (for which there are palliative surgical options that might have seen our boy through to adolescence) he was also missing a critical part of his brain and had kidney problems. All of these problems were discovered out of the blue at the 20 week anomaly scan. The advice from our fetal medicine team was that he would die within hours or days of birth and we both felt that termination was the right thing for our son and the rest of our family.

Have you spoken to ARC? www.arc-uk.org We didn't feel that we needed to talk things through, but I know a lot of people who have found speaking to them very useful.

All I can do is offer a handhold through what is a really difficult time with no 'good' options. Look after yourselves

[MorganM16]

Thankyou both so much for your reply, im really struggling at the moment, we both are the baby is our main priority and it’s hard because I don’t know What’s best for her, she’s so strong and kicks so intensely all of the time, thankyou both so much again Xxxx

[weasledee]

Morgan I am so very sorry and can't imagine being in your position, we lost our baby at 14 weeks to patau syndrome and as the pp said, the outlook was "not compatible with life."
I too would start a new thread as someone might be able to give more advice who has been through something similar....
Wishing you all the best x

[KTD27]

Oh morgan I am so very very sorry.
I don’t have any experience with your particular issues but I do unfortunately have experience with having to terminate my pregnancy due to medical reasons and a syndrome which was described to me as ‘incompatible with life’
Perhaps you might find someone who has been in a more similar situation If you start another thread on this board. Not that others won’t read it here but having your own with its own title might get some more attention your way.
Advice wise I have nothing but a massive virtual hug for you. Only you can make the awful decision and I genuinely don’t know what I’d do in your shoes. I suspect I would terminate the pregnancy but please know that if you decide to carry on that is absolutely ok too.
Have your hospital offered counselling at all?
Obviously don’t rush your decision and do lots of thinking it through with your partner.
It’s the worst pain in the world I know. You have my heartfelt sympathies xx

[MorganM16]

Hi I’m 21 years old and currently 31 weeks pregnant with my first baby , I’m not sure how to work this site so I apologise if I’ve posted this wrong. but anyway I’m a first time mum and at our 20 week scan me and my boyfriend found out we were having a girl. Not only that but we found out she had quite a severely large hole in her heart😔 2 weeks later at 22 weeks pregnant We were seen by a team of cardiologists who explained that our baby had a severe heart defect including the massive hole in the middle, a very narrow aortic valve and a tissue build up around the valve allowing less blood to flow around the body. As result of that they have offered us a single ventricle operation wich includes 3 operations until she is 5 however this does not fix the heart but is just a “get by operation “ with only a life expectancy of around 20 to 30, they give her heart problem a 9/10 of how major they think she is and have offered us a termination. Reluctant to give up me and my partner have been to Leeds and spoke to hospitals in London and even Canada they have all explained to us there is not much more they can do that alder hey can’t. And we are truely heartbroken, I understand it’s late but we attended a progress appointment 2 weeks ago and they have told us not much has changed, although it hasn’t got worse and she has 2 good pumping chambers wich is a good sign. we need to make a decision as soon as possible but I just cannot come to a decision and put this tiny, precious life in my hands, my partner believes it would be better to terminate because he does not want her to suffer, and we are struggling to meet eachother with this decision because I really don’t want to give up hope. If anybody can share with me any of there experiences or opinions I would really greatful I just don’t know what to do. It is so heartbreaking
Thankyou
💔💔 xxx

[ANewHope18]

Ah I see! Hopefully all will be well and all your scans will be clear. I hope your little boy is keeping well and you're a bit more relaxed :)

[KTD27]

No! Sorry. My rubbish fat fingers typed the wrong word. My little boy who is nearly two has one. It’s not something that can be diagnosed in utero and is electrical as opposed to plumbing as they’ve said. Thankfully can be hopefully cured with an operation at 5 but it’s very rare so they’re wanting to check this baby is starting off with a good looking heart just in case. There will be more checks when they turn up but I’m hopefully lightning won’t strike twice!

[ANewHope18]

Yay for average!! So happy for you, what a relief. Sorry, not sure I've completely understood, does baby have a heart condition? Was that found today?

Is your next scan booked? Thanks for updating ☺️

[KTD27]

Everything looks totally and completely average. I can’t tell you how much I love hearing that word!
They’ve agreed to scan me every 4-6 weeks due to last time and also our little one has a heart condition so they agree that cautious is the best approach for me. Can’t say I kind they could scan me every day as long as baby gets here healthy and well.
For now hoorah! Average feels good

[ANewHope18]

Ah fantasic KTD!! It must be a wonderful feeling, enjoy every movement

Everything will be crossed on Monday!

[KTD27]

New they’ve turned up!! It’s amazing. I ate a spicy curry last night and lo and behold baby woke up! I went from feeling nothing to actually being woken up in the middle of the night with kicks I could feel through my tummy. Am so relieved. Just praying for a healthy scan Monday and shall absolutely be back to update you!

[kitty1013]

Wow, I'd be over the moon to hear in a week! They said to me 9-14 days.
I only used the stairs because I didn't hear them say there was a lift!!
Their scanner was excellent. A 3D picture at 9+2 is really amazing!! And the sonographer was so nice and not the hard sell at all. So thanks again for recommending it.

[ANewHope18]

KTD27 I'll be thinking of you on Monday. I'll have everything crossed for a clear and healthy scan. Do let us know how you get on. How are the movements?

[KTD27]

Oh good luck kitty! It was a weeks turnaround for me for the panorama. Hope all goes well (also I totally used the lift 😂)

[kitty1013]

Thank you KTD for the recommendation. I had the panorama test today at the birth company and they were really nice . (Once I'd climbed all the stairs!!)
Now it's just a nailbiting wait for the results!
Kxx