Luigina's Story
This is about Luigina, our first child, who was born in Harlow in Essex in 1986 to myself Gill, and husband, Tony. Luigina was born 6 weeks early by caesarean due to my pre-eclampsia. The first question I heard from a young doctor, after I came round from anaesthetic, was to know if I was diabetic, which I wasn't. However these words were poignant. Luigina was large for her dates, had very low blood sugar which wasn't unusual in premature babies and I was told she was fine at one point followed by the fact that actually she wasn't and had something quite serious wrong with her.
Luigina was very poorly and developed septicaemia. Doctors at times had to run to get to her and sort out the latest dilemma. Weeks of tests followed and we were told it was Nesidioblastosis - now called PHHI, by a Consultant who had luckily seen the condition before and recognised the signs. Drips feeding glucose had to be maintained into her small body anywhere they could to keep her alive as her insulin levels were so high.
She was too ill to be moved but after a month was transferred to The Middlesex in Central London where she came under the eminent Professor Brook and his team. He even telephoned other countries, including Switzerland, confirming the best treatment for her. They tried to stabilise her with Diazoxide and Somastatin which helped, but finally she had a 95% pancreatectomy at 6 weeks old by Mr Russell who had not done this operation on a baby before. Some of her removed pancreas was sent for medical research. Luckily she did not require enzymes or insulin after surgery.
Five months of hospitalisation followed as the insulin levels were still high and despair set in many times when we thought the operation would have to be repeated and wondered if she could survive that.
Living at the hospital became the norm and she was tested every hour for many months to check her blood sugar levels. Her heels took a pounding with the testing. We took her home one weekend to see how we could cope - she had a blood sugar of 0.9 and we rushed back to the security of the hospital. Eventually we were able to go home but felt extremely nervous even though we were told she would be fine.
I bought a blood sugar machine and a medical book by Professor Aynsley-Green for some guidance on the condition, as there were no groups or support and it became my bedside reading. When we moved house a few years later and had a new hospital Consultant he said I knew more about the condition than he did, how I wished that wasn't the case.
We kept up a regime of regular feeding. She had a nasogastric tube in until she kept pulling it out at around 8 months and was fed at 12.00 midnight and 4a.m for 2 years as we felt we did not want to take any chances with overnight hypos and there were no guarantees. Our lives centred around her eating little and often. She did suffer from a few hypo fits and was hospitalised during her first 3 years but began passing her milestones and was a joy to us.
Food was how we controlled her levels which still dipped and our lives centred around getting her to eat little and often - bribing her to eat at times when I felt that if I needed to swing from the ceiling to get her to eat then I would. Anything to maintain her blood sugars. The odd twitch at night caused me alarm and many a time I tested her blood in her sleep to then have a screaming child, but once I knew her blood sugar levels were ok I could deal with anything.
Childhood illnesses came and went when I was on 'red alert' but mainly managed to keep her out of hospital. She enjoyed school even though she had a bad hypo on the first day and I had to run to the car for Lucozade. Often she struggled with her lessons, possibly a result of her difficult start in life. She finally became diabetic when she was 9 ½ years old which I had always felt may be the case when her 5% pancreas couldn't keep up with her growth. In a way becoming diabetic at least meant we had a name and a more tangible condition for outsiders to comprehend. We were members of a different group. Previously describing her condition to teachers had made me feel they thought I was an overprotective mother, explaining about the need for Lucozade and her food intake. We attended a few Diabetic weekends to learn more about the condition and after having a phobia of needles we both learnt to deal with this new condition.
The teenage years were not easy with her see-sawing from high to low and she was often in the school medical room, having to come out of lessons, but it's not the same for everyone.
She has been to college and has great determination and studied photography for 2 years for which she seems to have a flair, gaining triple Distinction which has enabled her to now go on to study Photographic Imaging at university, living in halls. I did have reservations but we have always encouraged her to live life and not let the diabetes get in the way and she is having the time of her life. She is cooking for herself and we regularly discuss the food and sometimes help her with her supermarket shop which has to be perhaps more healthy and balanced than the average student.
Luigina has embraced university life and has a part time job and is out having late nights/early mornings. We still need to sort out her 4 injections a day to cater for this new way of life and she has already had some low blood sugars but I am confident of her ability to deal with this and all that life throws at her.
I recently met some of her colleagues and gave them a quick run down if Luigina acts strangely of what to do - her health is always uppermost in my mind. Support and encouragement from different areas have helped Luigina do what she wants to do in spite of her problems.
Whilst in the early days in hospital we saw many cases with conditions that children weren't able to recover from and bad as we felt, we ended up with a walking, talking child and it could of all been so different. We are extremely grateful to the skill of the consultants, and medical team for making it possible for Luigina to live her life.
Nesidioblastosis is a big shock for any family to have to deal with but there can be light at the end, of what sometimes seems at times, a very dark tunnel. Academic achievement is not uppermost on our list of priorities, but helping her reach her potential, whatever that may be, and enjoying life is. Luigina has a sister, Olivia, 3 years younger who luckily does not have the condition. The condition is not ever going away, and each stage of a child's life may need a different approach but the rewards are there!
