My name is Beverley and my husband is Martin, our son is called George. George was born May 2000 after a great pregnancy, he was born at the Royal Free Hospital in London, he was big & healthy!! But the day after his birth he was not quite right, very cranky, wouldn't feed, sweaty & pale. We were to be discharged, but I stood my ground and asked to see another paediatrician, after a while he suggested that his blood sugar be tested, it was very low. We were rushed to S.C.B.U & stayed for a week of tests, George was on 25 % glucose, his blood sugars improved to 4 to 5s and the doctors were happy for us to take him home.
Home at last, our joy lasted for under 2 weeks, he was fitting, quite blue and vomiting. Back to hospital for more tests and back on glucose for another week. None the wiser, we were transferred to GOSH to the endocrine department and within two days Dr Khalid Hussain had diagnosed George with HI. We then started on the various drugs available, George was still on 25% glucose through his first hickman line. Unfortunately none of the drugs helped, he never had his glucose infusion lowered. He also had extremely bad gut motility, constant vomiting and diarrhoea, and was being fed by a nasal gastric tube.
The team decided after the PVS biopsy that George had many lesions, the worst being in the head of his pancreas. The surgeon removed 85% of his pancreas. Again he was still requiring 25% glucose and was also put back on drugs for a further 6 weeks which again did not work. We had been in the hospital for 12 weeks at this stage. I stayed with George and Martin came every day, as did our families. The doctors and nurses plus the other mums made our stay a lot more bearable. All were very supportive and caring. In week 12 George had most of the remaining last 15% of his pancreas removed. The surgeon just left a strip.
A few days after surgery he was requiring insulin but his blood sugar then stabilised. The best thing ever was having his ninth hickman line removed. We were able to hold him for the first time without him being attached to a machine. George came home after 15 weeks of being in GOSH still not requiring insulin.
We were back and forth for the first year to the hospital, mainly for his gut damage. He still has a few problems, he has many food intolerances, is a very bad eater and still on drugs including pancreatic supplements. He is 4 years old and a very healthy normal little boy. We attend GOSH once a year for an MOT. Our time spent with George and other sick children have taught us a lot and given us great strength. We keep in contact with the other parents and have made friends with the nursing staff and doctors. We endeavour to help the fundraising for HI, for the important research into this complex disease.
