Geordan Andrew Tomlinson was born on 27th March 2003 at 11.20am by Caesarian Section at 30 weeks. He weighed 3lbs 2oz. Geordan spent the first 68 days of his life on Meadowbank Neonatal Ward at Bedford Hospital. During his time on Meadowbank he had jaundice, 2 chest infections a lumbar puncture and two blood transfusions. We finally got Geordan home on 2nd July 2003. This was his actual due date.
Geordan was born prematurely and he was not putting on weight. My previous pregnancies had resulted in Geordan?s sister Charlotte being stillborn at 33 weeks and prior to that I suffered a miscarriage at 9 weeks.
At the age of approximately six months we noticed that Geordan did not follow anything with his eyes and he could not support his head or hardly move. Geordan was also suffering chest infections every 3 to 4 weeks. We continued to push doctors and he finally got referred to our local Child Development Centre. At first they said Geordan was a premature baby so he would be behind in his development.
At the beginning of August we went to Bedford Hospital Eye Clinic. Geordan could follow a Christmas decoration briefly but they agreed that his visual responses were delayed. Geordan then went to Addenbrokes for more tests. In January 2004 Geordan started having episodes where he seemed to be distant for hours. His eyes would go funny and he was not able to go to sleep. Again the doctors were not overly concerned.
Geordan started physio and light therapy. In February, my husband, Phill, gave up work to be Geordans full time carer. Alistair came home from school with chicken pox and two weeks later Geordan came out with chicken pox. He was really poorly for about 10 days and then suffered a secondary infection. In April these episodes were getting more and more frequent. Finally in July we got a referral to David Harvey Children's centre at Hammersmith Hospital. Geordan had endless tests. MRI brain scan, nerve ending tests, brain activity tests and blood and urine tests. Everything came back as normal.
Geordan was admitted into Bedford Hospital on 19th August until 26th August for observation. He had no episodes during his time in hospital but picked up a urinary tract infection. He started Doperidone, omperazole and nitrourantoin for his reflux problem. He was also given a nasal feeding tube and started pedisure milk to bulk him up. He was no longer allowed oral feeds apart from a drop of water or milk.
In September Geordan had a muscle biopsy and a lumber puncture at Hammersmith Hospital. He also had video fluoroscopy. Hammersmith could see that since a nasogastric tube had been fitted Geordan?s weight had improved. He still showed significant drooling, facial weakness by persistant open mouth posture. He also had a high palate and limited tongue movement.
At the beginning of October, Geordan went back into Bedford Hospital. The day Geordan went into Bedford Hospital, Hammersmith phoned to say that they had found out that Geordan had Aromatic L Amino Acid Decarboxylase Deficiency and that they needed to start him on medication. He was in hospital for about 10 days and we noticed a slight improvement in his movement and the episodes were less frequent.
Geordan came home on Wednesday 14th October weighing just over 22lbs. On 16th October Geordan came out with another chest infection.
On Sunday 17th October Geordan died.
I was up to him at 3a.m. and he had a feed. We heard him at around 6a.m. Sometime between 6a.m. and when we got up at 7.30a.m. Geordan had died. We found him lifeless in his cot. We tried to revive him but it was too late. He was rushed to Lister Hospital in Stevenage, but it was too late. Just 19 months old and he was gone.
Geordan was a very smiley loveable baby. He was extremely hard work and we had many sleepless nights with him but he has left such a big hole in our lives. We miss his laughter. He battled throughout his life but in the end it was just too much for him.