Jonathan was born by emergency C-section at 36 weeks and 4 days following a car accident; at birth he had an Apgar score of 1 – i.e. his heart was beating, but he was not breathing and was blue and lifeless. Initially cared for at the local hospital’s special care baby unit, Jonathan didn’t make the progress they were hoping for: at 10 days old his kidneys still hadn’t started working and he became floppy. He was then transferred to the regional children’s neonatal intensive care unit and, at two and half weeks old, had an MRI scan of his brain. Here he is in the transporter incubator going for his scan:
“It’s the worst scan of a brain the technician has seen”, I remember one of the Neonatal consultants telling us. He thought it was a shame that Jonathan wasn’t on a ventilator at the time as then we could have “switched him off”! The list of the things Jonathan would probably not be able to do was seemingly endless – run, jump, sit, talk, eat – even recognising us, his parents.
During the next few months we had to make decisions on whether or not to continue Jonathan’s treatment, particularly for his kidneys which never recovered from the car accident. Each time we had these conversations with consultants I asked them to look at the baby in the cot; there was something about him. A knowing look. The look of someone who was ‘in there’.
Eventually we brought Jonathan home, but spent a large amount of the first 4 years of his life in hospital either on planned or emergency visits as his kidneys didn’t improve; he had a kidney transplant just before his fourth birthday. Despite all the visits to hospital and illness, it was obvious to us that Jonathan was there, looking out, even if sometimes he ‘drew the curtains’.
Jonathan wrote an autobiography in the summer of 2015 and this is what he wrote: