4 February 1994 - The bad news

Again she quickly went down bank and after a couple of days, back I went to the consultant’s clinic where another doctor said he thought she had RSV. He watched her feed and said if she was worse the next day to come back. We got in the car and she was promptly sick again and I burst into tears. She was about 14 weeks old by now.
The next day she looked just awful. She was grey and struggling for breath. It sounded like she was drowning. The cardiologist thinks she’d had a heart attack during the night. We rushed her back to the ward where they put her on a SATs monitor and did some tests for RSV. The nurse commented that the SAT’s machine wasn’t working properly because the oxygen levels were 100% and her heart rate was 200 (& that couldn’t be right ??). We went for a chest x-ray and when we got back they put her on another monitor. Within 10 minutes of us getting back from x-ray all hell broke loose. The film showed that her heart was so enlarged that it was collapsing her left lung. And the new monitor showed her HR was still 200. The paed came to tell us that she had a problem with her heart, possibly a virus, and she would need a scan. At this point I just shut off I think, they were asking me if I needed to know anything but I just said ‘No, its fine’!! Even when they talked about going to the Children’s Hospital (Birmingham) it just didn’t register with me. They said she couldn’t go for the scan for a while, so I left her with her dad and went to collect the boys from school and nursery. When I got back, he was on the phone. The ambulance had arrived to take her so he had to go and he said he would ring me. We were told that she’d be coming straight back and the ambulance would wait.

I truly regret leaving her with Gary that day. I was in complete denial of the seriousness of the situation I think. I don't regret it because he wasn't up to the job - he was and is more than up to the job. It's just that I wasn't there for him or for Emily at possibly the worst moment......


Well when he got to BCH it was a different story. He says that when the doors opened a sea of people greeted him, a full PICU team, who took Emily from him. Even before the echo they said that from the ECG they could tell that she either had a serious congenital defect or a virus and either way they weren’t sure they could do anything for her. They wanted me there immediately.

Gary doesn't speak about how he felt at that point but I know he was badly shocked, close to breaking down I think. I heard it in his voice. It must have been a dreadul call to make as well as to receive.

You can imagine how I felt; they were 50 miles away. My dad drove me and I thought it was the worst hour of my life (little did I know). She'd gone into cardiogenic shock and when I arrived they had ventilated her and were basically waiting for me to say goodbye. So I had two precious minutes with her before they went to catheter and then hopefully to surgery. After a couple of hours they came to say that she had Anomlaous Left Coronary Artery from Pulmonary Artery ALCAPA and she’d gone to theatre, plus she did have bronchiolitis which was an added risk. Her LV function was so poor they could only hope that she’d get through. I vaguely remember someone bringing us tea and explaining about the defect but apart from that the night is a complete blur.