Has anybody been in the same situation?

[booJo24902]

Hi all had my 20 week scan and the scan lady wasn’t happy with baby heart. So transferred us to another hospital where they found he has ‘Complex CHD in the setting of right isomerism’ They did ask if I want to terminate but Ive been physically sick just the thought of it. Please anyone with some knowledge or who has been through the same thing with their babies and the outcome. Tia XxxxxX

I cant offer any advice unfortuantely but we are going through similar.
A heart issue was discovered at our 20 week scan. We had an urgent fetal medicine referral and then a paediatric cardiology referral. There is a vessel issue which can be linked to left isomerism.
We were offered an amniocentesis to look at any genetic factors.
Im not sure if you have been offered this yet?
Have you spoken to fetal medicine or a cardiology consultant?
Isomerism, left and right sided, from what i've read is pretty rare. Ive struggled to find good information on it.
It has helped speaking to various consultants though.
Just want to offer you a hand hold.
Its terrifying 😞

This is what was in my scan report by fetal medicine unit specialist 😔 I really don’t want to terminate but I also have other children too. Absolutely sick with worry.
Hope your okay this is so so hard & wouldn’t wish it on anybody xx

Our report is similar, although the heart structure is ok, its more around the blood flow outside the heart that is an issue.
We have been told about the risk of the spleen being non-existant, having multiple spleens or it just nor working and baby needing antibiotics for life. Also been advised about the malrotation and obstruction of the gut which may not materialise until later on.
We had another really detailed anatomy scan to check the placement of organs and it seems normal which is good.
However, this then points more towards genetic/chromosome issues which we were offred the amnio for.
I think right sided isomerism is less related to chromosome issues so an amnio may not even be necessary for you.
Have the next appointment and detailed scan and then have a long discussion.
Its an awful situation. I feel constantly in limbo and not sure what we are going to do next. I honestly feel numb over it all now. We also have another child who is excited to have a sibling and its crushing me not knowing what is going to happen.
Happy for you to PM me if you need to vent at any point.

It’s just absolutely awful and I’m so sorry you’re going through the same. We have 1 on Friday his organs seem ok for now but defo find out more on Fri. Same I really just want this absolute rollercoaster to end tbh it doesn’t seem real. I have 3 babies who want their little brother so I know exactly what your going through xxx
thank you so much! You too! Just feel so angry at the world right now xxx

Im wishing you all the best for friday. I really hope you get a clearer picture and are given some more options.
Take each day as it comes and write all of your questions down so you can go to the appointment prepared xx

thank you. This is a really sensitive subject but have they told you to terminate or that you could? My consultant didn’t seem bothered when I said I couldn’t do it now and she just said that this is an option. But I just don’t know what the best for him is xx

They have basically said that it is an option depending on what other factors are there. But this is dependant on whether a life limiting issue is found on the genetic side of things.
It is a personal decision I guess. I dont think termination is an option if there isnt something life limiting etc but I think were in a waiting game at the moment.

Yeah same. I think we have decided if he needs lifelong care around the clock that wouldn’t be fair on him. It’s just awful. And I feel so angry at everyone pregnant with healthy babies atm even tho I know it’s nobody’s fault x

I hope your appointment went ok today and you got time to discuss things properly.
Thinking of you.

oh bless you! Thank you 🥺
his condition is just so severe he wouldn’t have a life I think maybe I was just hopeful that he would be ok but he won’t be 😔 I’m absolutely heartbroken we have to let him go next week x

I'm so sorry. What absolutely devastating news for you all.
Im glad you had the appointment and were able to discuss things properly to come to a decision, all be it not the decision anyone wanted to have to make.
Just take time to process things.
I hope next week gives you all the time you need with your son and the staff look after you.
Im so sorry 😞

Thank you that’s really kind. ❤️❤️
I hope you’re okay? Have you heard much else xxx

We're just still awaiting results at the moment. So in limbo.
It's stressful to say the least, but we can't really do anything else right now.

Oh bless you. I hope your results are kinda to you ❤️❤️ It’s just awful I wouldn’t wish this on anybody ❤️❤️

I wouldn't wish any of these scenarios on anyone either. It's the most stressful situation to be in.
Please be kind to yourself though, this is nobody's fault, you have done everything right. Take comfort in knowing that.

Thank you xx you too xx

Hey lovely. Hope your okay xx

Hello, thank you for asking.
We're ok tnank you. Our results came back ok, nothing detected which is good. But awaiting more scans to check for additional anatomy issues now. Thats something we will have to tackle if they appear.
The heart issue still remaims though.
Its still a waiting game.

I hope you are doing ok? Xx

oh bless you. I wish you all the best i honestly do xxx
our son was born 25th June. His heart condition was too complex and he would have suffered his whole life & we would out live him so we had to let him go. Xx

So sorry for your loss.
I hope you got to spend all the time you needed with him.
Its such a horrible decision to have to make at any stage. No parent deserves to outlive their children.
I really hope you are ok and have lots of suppprt at this time xx

Thank you❤️ Yeah my partner is my rock I wouldn’t have been able to get through this without him. I really hope your little one is okay ❤️