Amniocentesis long results

[gderb]

Apologies this might be a long one!

We found out at our 20 week scan that little one has a serious heart defect and from further appointments that open heart surgery will be required as he has been diagnosed with TOF.

We were advised to do the amnio, which we did on Monday late afternoon and got initial results back on Thursday which were all negative which was great news. They told us to wait another week or 2, as TOF can be associated with Digeorge syndrome which this was testing for.
We waited another 1.5 weeks and called the fetal medicine unit, who advised they were unable to pull the cells so had to re grow it for another week and to call back yesterday.

I called again yesterday and the same thing again, they tried to pull the cells but it needs regrowing so to wait another week. It's been nearly 4 weeks since the amnio, and the worry and anxiety is overwhelming me. Has anyone ever had similar where the amnio had to be regrown etc?

Sorry, nothing helpful to add re the amnio but just wanted to reassure you about TOF and the surgery. Having worked on a major paeds cardiac unit, I have seen many many little ones have surgery and do really really well. Having since had my own children, I can only imagine how horrendous it all must feel, but try to stay positive. The surgeons are amazing at heart surgery now.
Sending very best wishes

Hi, sorry you are going through this. The waiting for results is so stressful. I have had an amniocentesis but didn't need to wait longer than 2 weeks for the full results. I found that the anxiety was almost overwhelming so I really feel for you having to keep waiting . They did say at the time when I had it done it would depend on how long it took to grow the culture so it had enough DNA to do the testing. We were also waiting for the Digeorge result as our baby was diagnosed with TOF also.

I really hope you get your results soon. I remember feeling like I couldn't start to get my head around the heart problem before knowing the amniocentesis results as I was just filled with anxiety about them.

Our little one has had the TOF repair now and is doing really well. If you ever want to message me about it please feel free.

Hope you are doing okay, sending best wishes.