Jame's Problems
On this site we have discussed Shanley who has Albinism, but I also have another son. He is called James-Ryan known mainly as Jamie. Although James escaped the Albinism he was born with other major problems.

James was born by C Section 4 weeks early weighing in at a whopping 9lb 5ozs, a very good weight. I am an insulin dependant diabetic and as a consequence he was a 'Cherub Baby', born large. But James was not breathing and had to be resusitated, he was also a horrible blue colour. He was whisked away to the Special Care Baby Unit where he was put on a ventilator and needed to be resusitated several times that night.

In the morning the consultant paediatrician came to see me, he drew the curtain round us, sat on the bed next to me and put his arms round me. I thought 'Here we go'. He explained than James was very poorly and needed to be transfered to Royal Manchester Childrens Hospital immediately to their intensive care unit. He said he needed a heart scan as they believed he had a condition called Transposition of The Great Arteries. His pulmonary and aorta valves were the wrong way wrong, pumping blue (dirty) blood round his body. His chances of survival were 20%. I was devastated. I was taken down to SCBU in a wheelchair to see him off in a special ambulance. They took my blood to cross match for him, I stroked his tiny little hand. It was so sad, he was blue, a terrible colour. The staff caring for him were brilliant.

Once in Manchester they telephoned across to say he was going to theatre for surgery to perform what they call a Balloon Septostomy. A tube is inserted through the groin up into the heart to close the hole in the Septal Duct, thus giving him time to get a little better before major open heart surgery.

Two days later I went by ambulance to see him and have him baptised as they feared the worse. They explained that they had had to resusitate him 8 times the night before and if he went down again it would be best to let him go.

At this time the Intensive Care Unit was very small and a new unit had been built. The move was scheduled for the day after my visit, top doctors, Mayor of Manchester and other important people had been invited as well as caterers for the party etc. The move had to be delayed by 2 days and everything called off as James was just too poorly to be moved down the corridor as he would need to be bagged (oxygen pumped by hand into him) for the move.

They moved him into the lovely new unit and then came the next blow they were looking for another hospital to take James to carry out the open heart surgery. No-one wanted him as he was too big a risk. Eventually Birmingham Childrens Hospital said you had a 24 hour slot to get him down to them. We ordered an ambulance and he was prepared for the move, but the incubator ventilator did not work, they messed about with it for 2 hours before sending it away. Only one other specialist ambulance was available and that was transfering twins to Alder Hey, we had to wait. Eventually at 6pm the ambulance and crew from Alder Hey arrived and james was loaded into it with a doctor, paramedic, nurses and a guy from Alder Hey who was in charge of the ambulance. With a police escort (to cut through traffic) they set off.

James' birth father and myself followed on, we were cut up by a lorry on the motorway and ran into a load of traffic cones, they bounced off the roof of our car, then we got lost in Lozelles the red light district of Birmingham, we stopped two young black girls to ask for directions and were picked up by two coppers. Nightmare, we explained our situation, they knew about it, and we ended up with a police escort to the hospital. Thanks guys.

James had travelled well and we were shown to our Room and settled for a nights sleep. In the morning we went down to the Intensive Care Unit to see James and speak to the surgeon, he said that James was in a worse condition than he was led to believe and just to get through the surgery would be difficult. He was wheeled to theatre, I went with him. The operation, known as a Arterial Switch took around 6 hours with two hours to warm him up after as they had to freeze his heart while the work was done on it. He was on a heart/lung machine during this time.

Over the next three weeks he made enough progress to be moved onto PBG ward (Parsons Block Ground) but still needed oxygen. He did not seem to be improving and the SHO would not listen to me. I asked his nurse to get someone in for a second opinion. I finally got one, he needed another operation. His diaphram had been damaged during surgery and needed to be stitched down. After this was done he was well enough at 6 weeks old to finally come home.

He is now a 17 year old, happy and full of life. Its left him with bad lungs and he has severe asthma and reflux (he vomits a lot), he's lactose intolerant but lives a good happy healthy life. We don't dwell on it, he is a bright a lively child as the picture below depicts.

James is now at Sixth Form College and is very much into drama and music. He has just started to learn to play the guitar and plays the Harmonica and Accordian. He joined the singing group at school and has taken his Grade 1 in July 08. He is also an active member of the drama group and played the part of Scrooge in the Christmas play and he was fabulous in it. He has just had his Cardiac check up and all is fine and well and goes back in 2 years.