Today was not a good day. Phillip, mum, Chris and I went to Kings with the hope of finding out what was wrong with our baby. After a long wait we were seen by a sonographer who confirmed that it was indeed CDH. They assess the severity of the condition by calculating the LHR. This is a measurement that shows the lung volume of the babys "good" lung in relation to the head circumfrence. As the baby has abdominal contents occupying the right side of its chest they focus on the left lung and assume the baby has no lung function on the right hand side. However, due the the fact that the heart is now sitting where the left lung should be this affects the growth of the left lung.
From the vast amount of research I had done I knew that anything over 1.4 is good and the prognosis is good for these babies; between 1.0 and 1.4 is pretty touch and go; below 1.0 relates to a very poor prognosis with survival rates being less than 10%. We were told at this stage that they offer FETO (the balloon procedure) to those with a very poor prognosis ie LHR < 1 and liver hernitation.
When in a situation like that you seem to go into a coping mode and your mind convinces you that you will obviouly be one of the "good" cases, I think it is it the only way you get through it and without that hope your body would shut down. I was assuming this was the case and asked the consultant if the professor would be discussing this with us and if he would inform us if the LHR was less than 1 and if the liver was in the babys chest: I knew I was asking this but did not believe for one second it would be the case. When she abruptly answered that the LHR was 0.5 and that the liver had herniated I thought I was going to pass out. I have never experienced a feeling like that and hope I never have a moment like that again in life.
The consultant gave us a leaflet on FETO and we left to discuss this with mum and Chris before seeing prof Nicolaides an hour later to discuss. As you can imagine we were all over the place, I felt I couldnt even get my head clear enough to explain to mum and Chris what they had told us nevermind make such an important decision in an hour. In the back of my mind I was thinking that maybe they were all wrong and this really was not as bad as it seemed....then we met with the professor.
My opinion of someone has never changed so much. I now have so much respect for the man and think what he does is truely amazing, he genuinely cares and wants to save as many babies as he can that will otherwise not make it. This was not the case at our first meeting. He came into the room, told us our baby had a very severe diaphragmatic hernia and that we had 3 options:
a) terminate the pregnancy
b) continue with expectant management with the baby having 10% chance of survival, he said that he was giving is 10% but he was being kind it was really 1-2%.
c) go for the FETO surgery which would increase the babys chances of survival drastically.
He gave us the option of having the surgery done that day and although now it seems like there wasnt really a decision to be made when you have been hit with such awful news your brain does not function properly. I felt certain he must be wrong and never wanted to see him or that hospital again.
We declined the surgey that day and left London with the most stressful week of our lives ahead of us.