Complex congenital heart disease

[Lolla8686]

We found out today that our boy has complex issues with his heart - 5 different issues. I had an amniocentesis to see if this is caused by genetic issues. The options I seem to have now are medical termination or go to full term and then palliative care for whatever short time he has left. From what I understand there's not much they can do for him. I just want someone to tell me what I should do. I feel overwhelmed with a the information I've been given today.

We needed ivf to get pregnant; I thought that was the hardest thing we'd have to experience. I was wrong.

So sorry to hear that news. My first daughter was born with hyperplastic left heart syndrome. Which wasn't detected before birth, she lived till the day before she was 3 months.
We later found out it was Di George Syndrome.
It was hard and it still is 32 years later, but I'm glad I got to spend time with her.

Op, I didn’t want to read and run. I’m so sorry you’re going through this! It’s a hard decision but not one you need to make today. Take some time to grieve the pregnancy that you have longed for before you have to make this decision. Do you have a good support network around you?

So sorry for you. Please stay strong, whatever you decide to do is a right thing.
As a mum of a rare baby my heart is breaking for you. Just know that you are not alone, it's a hard time, please use the help available - family, friends and support groups. Sending love your way.

I have nothing to say to help the heartache but holding your hand along the way. How are you doing, have you had time to process & digest the information you've been given? I have been in a similar position myself, different condition & process of finding out just how ill he was, but it really is the worst thing in the world. I'm so sorry

I'm so sorry you are going through this OP. We chose TFMR when my baby was diagnosed with trisomy 13. I was told similar to yourself. TFMR, possibly MC at any point for the rest of the pregnancy, or palliative care for the hours he might have lived. Take your time, write down your plus/minus thoughts, speak to your partner etc. Remember that this is not your fault, you did nothing wrong to cause this. I'm happy to answer any questions you might have

ARC and very good and worth getting in touch with www.arc-uk.org/

Hello everyone,

We had a second opinion today that confirmed the worst and helped us to decide that organising a medical termination is the kindest thing to do. Thank you for responding. I don't know how I'll cope with this.

I am so sorry OP, it is truly heartbreaking. Sending you strength during this time, take each day by day, hour by hour. Whenever you feel ready, there is a whole community of those who have experienced the same, I found connecting with others who had a similar understanding comforting, but I know it's not for everyone. I so wish none of us had to experience this awful pain. Hand hold

Just wanted to send a hug as my TFMR in 2021 was the hardest thing I've endured, but also the most selfless to prevent my boy from pain 💔
You are one strong mummy xxx

Hi OP, I know this thread was a year ago but I just wanted to see how you were doing? We are currently going through this exact nightmare.. I guess I just wondered how you made it out the other side of grief? The light at the end of the tunnel seems very very distant right now 😔

I'm so sorry. It's still very hard, but I'm slowly learning to cope. Send me a DM, and we can talk more if you like, and I can answer questions xx