Thank you for the replies. I have only caught up on the last few pages of the thread but I am planning to go through tonight and read about the rest of your much loved babies.
@JennyMY I am so sorry about your twin. It is a very bittersweet thing to lose a twin. Take care of yourself.
I was originally under FM at Oxford and it would be around an hour drive to get there from Birmingham, where I live now. As @JennyMY said I felt like i didn't want to have to explain myself, as I found when I had my appointments at my local hospital, they always tried to second guess the consultants diagnosis and it was really draining.
However, I'm reassured to hear what @Kiki275 had to say about Birmingham Womens, especially with regard to communication. This means I could have my FM and normal appointments in one place, which I guess makes the most sense.
It just occurred to me that I haven't shared my full story, which I want to do incase anyone comes across this thread who had a similar issue.
At a 16w private gender scan, the sonographer noticed that my son had an odd shaped cerebellum. We were referred to FM in Oxford who advised a double amnio and another scan at 20 weeks. The odd shape was due to a cyst in the back of his brain, which they hoped would just be reabsorbed.
Unfortunately the 20w scan revealed it had not reabsorbed. They said it wasn't possible to understand more without an MRI which was scheduled for 30 weeks. They seemed confident all could be well, it just depended whether or not the cyst was putting pressure on areas it shouldn't.
We carried on with hope in our hearts. Got all the stuff twins need etc but unfortunately the MRI revealed that the cyst was pushing on his cerebellum, squashing his vermin and basically meant he would be severely disabled. He was diagnosed with a condition called Pontecerebeller Hypoplasia, which is believed to be inherited. They could see from the MRI that he wasn't swallowing already and had 4 times more fluid than his twin. We spoke to the peadatrician, who explained abouthis condition and we learned his life expectancy was short.
We decided to opt for the injection to stop his heart. I couldn't bare the thought of him dying alone, more than anything else. As it was, he died having only known the love and comfort of the home he shared with his twin. I carried them both for another 2 weeks, to give his twin a better chance of avoiding NICU.
I have moments of sheer panic that the doctors were wrong, and it was all a huge misunderstanding and wrong diagnosis. I can't quite get my head around the late diagnosis and how something so catastrophic could be so sneaky. How come normal scans didn't show the damage? The genetic testing came back inconclusive and they wanted us back for more but at that time in our lives, we just needed to try and enjoy our other son. We never discussed having any more children with the consultants, so no one told me that this could happen again and I feel hugely irresponsible right now :(