Multiple CHDs and high chance of a chromosomal issue

[Sarah369]

So we went on Tuesday for our 20 week scan and found out they suspected a heart issue and they also couldn't get a good view of babies face. We were referred to a fetal cardiologist and fetal medicine unit.

We went to the heart specialist the next morning and they confirmed baby has multiple heart defects. We are an extremely rare case meaning they can not give us any idea of the outcome. We have been told baby will guaranteed to heed multiple open heart surgeries if they are even able to operate. They won't know this until baby is born.

On top of this we had a further scan that afternoon at fetal medicine who told us that baby has either a missing or extremely small left eye. The face and heart issues together give a high probability of a chromosome abnormality. We had an amniocentesis done there and then and we are now awaiting the results. We should have the downs, Edwards and patau results back tomorrow ( they suspect these to be negative due to such low risk scores at 12 weeks) and then it's 2 weeks for the CGH array. I'm really struggling with this waiting game. We need to wait for the results so we have every piece of the puzzle. But my head is a mess. I am calling FMU tomorrow with more questions I've thought of over the weekend.

They discussed that we have the option of continuing or stopping the pregnancy. I'm 21 weeks. I'm terrified of having to make this decision. On one hand how can I be repobsible for my babies death but on the other hand what kind of a parent would I be to bring a child into the world who may likely die very soon after birth or be put through numerous painful procedures. And on top of that may have a poor quality of life.

This has been the worst wwwk of my life. Before we even have the chromosome results the heart issues mean guaranteed a few months in nicu in a hospital in London so I will be away from my other 3 children. There's also the impact on them of having a very poorly sibling.

I'm so sorry for rambling and thank you to anyone who has got this far.

Don't suppose anyone else has been on this situation?

Or is waiting amnio results and we can wait together?

 

[sbl]

No experience but couldn't read and not send big hugs your way

 

[Sarah369]

No experience but couldn't read and not send big hugs your way

Thank you

 

[ClairAye]

I have no similar experience but just wanted to send a huge hug your way!

 

[xxmyheartxx]

I have no experience, but want to send many hugs to you all xx

 

[Sweetkat]

Hope the test results give some clarity. I have not been in your position but had a miscarriage at 10 weeks and subsequent tests showed the baby had downs. I also had two other losses due to chromosomal issues. I think any decision you make (whether to stop the pregnancy or carry on) will be right.

Big hugs xxxx

 

[Sarahcake]

I've never been in this position and I can't imagine how hard it is for you. I didn't want to read and run but I have nothing of any use to say. All my love to you, such a difficult time and a huge decision to make.