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Adam Page – Born 18 October 1991

My name is Adam Page I was born 18th October 1991 in the Royal London Hospital.  I was born with a soft cleft pallet and Pierre Robin Sequence. This was not the easiest thing for my parents. When I was born blue they rushed me straight off to intensive care where I was placed on a life support machine which I would remain on it for well over two years. There were gaps in-between where I came off it but had to go straight back on it, due to my tongue falling back in my throat and blocking my airways. The doctors and nurses had absolutely no idea of what was wrong with me all they could disclose was that I was seriously ill and they weren’t sure whether I was going survive.

After a couple of days after being born the doctors then diagnosed me with what is cleft pallet and PRS. My parents received very little information, so my mum decided she would go and study something in regards of how to treat cleft/PRS child… At the age of two months the hospital started struggling to keep me alive as they were fast running out of oxygen. So they opted to send me to the nearest hospital with a cleft, which was Billericay Hospital known as Broomfield Hospital. They did state that I would have to return to the Royal London Hospital for my 6 month operation as the cleft team in the Royal London would have to treat me. At 6 months old I returned to Royal London Hospital to have my cleft repaired, what should have been a straight forward operation went horribly wrong. The doctor doing the procedure was Dr Brian Sommerlad (absolutely brilliant doctor) after the repair he said to the anaesthetic team along with one other doctor they would have to finish up and take me through to recovery as he was urgently needed in another theatre.

5 hours later I was still in theatre and Dr Brian Sommerlad went to the ward to see how I was doing and said to my parents “where is Adam?” with my parents replying “we thought he was with you in theatre” he said no I finished his operation hours ago. I had to leave the theatre after I had finished the procedure as I was urgently needed in another theatre”. Dr Brian Sommerlad then called the theatre to find out what was happening and the reply was that since he left there’s been major problems they were struggling to keep me alive, my mum had overheard the conversation and rushed off to theatre with Dr Sommerlad. When they got there they fount I was on my back, they had completely ignored what my cleft doctor had told them not to put me on my back. My mum rushed to my aid and put me straight on my tummy where then all of a sudden my sats and everything started returning to normal. 2 hours later I went up to the ward where one doctor had even told my mum I had fixed dilated pupils in other words I was brain dead. Later on when my cleft doctor returned my mum questioned him on this and he told my mum this was ridiculous I had normal pupils, he did a CT scan to prove there was brain activity. He said the only problem could be, they don’t know whether I will talk or not. Not long after I was then transferred to Great Ormoand Street Hospital, where I was fully looked after and my mum was trained how to change my breathing tubes etc so she could then bring me home.

From then on I had no problems apart from little speech problems which I received speech therapy for which went by the age of 6. From the age of 6 I started to have long term of ear problems. I was never properly accessed till I was 8/9, each doctor passed it off as chronic ear infections. I was finally referred to an ENT consultant where he then said I had a glue ear this was because my left ear drum had burst they believe this was due to my PRS. They then proceeded to rebuild my ear drum once completed they then inserted grommets (ear tubes) in both my ears. At the age of 9 my speech started to go downhill again which the cleft team then discovered there was another hole on my pallet, so they repaired it and my speech went back to normal. At the age of 14 I had gone through 6 sets of grommets, they decided that the best way to proceed would be to insert T tubes as there is no chance they would fall out. At the age of 16 they discovered that my right T tube had managed to twist and it needed to be taken out. After removing the T tube I was told to go back after 6-7 months as the hole from the tube should have healed up. In that time my speech started to go downhill as they discovered a hole had repaired but the muscles in the pallet were coming loose, so they took me in for another cleft repair as well as to tighten up the muscles. One month after my cleft op I had and appointment with the ENT, where they had discovered the glue ear had come back and meant they would have to rebuild the ear drum again. They rebuilt the ear drum then last year July they inserted my T tube when I went back 2 weeks later for my follow up, it seemed my T tube had disappeared, and I needed an emergency operation. When they took me back to theatre they noticed my ear drum had sucked in and sucked the tube in with it, they had to promptly remove the T tube and pack part of the drum and re insert it in to a safe place. I then went on holiday in the August and the last 3 days of it began to feel really sick and then my left ear started discharging.

At first it was just moderate but then the ear started bleeding I had to seek medical attention. When I did they did not know whether I would be able to fly home. After returning home I was rushed straight in to hospital, they claimed it was just a really bad infection but I knew what it was and that was my ear drum had gone again even though I was told on numerous occasions by junior doctors that wasn’t to be the case. I then managed to get an appointment with my actual ENT Dr Michael Wearing (really good doctor again) which he then confirmed I had no ear drum, I was told that they have to rebuild my ear drum as this is part of my PRS.