Ruby Skye Johnson was born on 6 th April 2007. Straight away she went to the special care baby unit where they discovered her bladder was 10 times the size it should be. The only way to correct this way to have a long term catheter fitted through her tummy. She had problems with her bowels too, but they appeared to resolve by themselves and after 3 very scary weeks she was allowed home. Mum and dad trained up how to change the catheter and things settled into some kind of normality for a few months. But then she started having problems with her bowels. They would obstruct, but an x-ray would show there was no mechanical obstruction; it was a case of the bowel randomly shutting down. Her stomach would blow up to huge proportions and she would require hospital admission because of vomiting and dehydration.
In her first year of life she had 18 hospital admissions including a 2 month admission which included many tests to try and get to the root of the problem.
In her second year of life the doctors at QMC decided it was best to refer her to Great Ormond Street Hospital in London. The Consultant recognised the symptoms and ordered further tests. She then got her diagnosis of a very rare and often fatal condition called Chronic Intestinal Pseudo Obstruction. Her admissions into hospital became more frequent and severe, and in January 2010 she had surgery to create a Stoma to bypass some of her bowel.
It was hoped this would help her but in fact it made her much worse and from January she was in hospital nonstop until September. Mum and Dad stayed with her every day and night, and lived in the hospital with her. Up until August of that year she had been eating food on and off, but was not gaining any weight, so they decided we should feed her milk through a tube in her stomach. But still condition deteriorated and they had to place a central line in her chest which means that all her Fats, Calories, Vitamins and Minerals (called TPN) are fed directly into a vein near her heart overnight.
TPN has only been around for half a century and it scares us to think if she was born 50 years ago she would not have survived. Mum and Dad completed extensive training, and now Ruby has TPN at home instead of hospital. We are extremely proud of her and our lives revolve around her. She is extremely intelligent, witty and very very happy.
We are dedicated to making sure she enjoys every day and to keep her life as ‘normal’ as possible for her. We fight for her and she has just completed a year at pre-school, she had a one to one worker to watch her from afar and help with any medical issues. She is extremely popular (especially with the boys!) and her personality really does just shine! Dedicating ourselves to Ruby means she requires 24 hour care J Ruby now can eat small amounts, and has one night per week off TPN, she has gone from having an obstruction every 2 weeks to not having one in the past 9 months. However she still suffers from pain, she has a Ileostomy, a Gastrostomy, a Central Line and a Catheter. She requires medication 10 times per day… yet she is the happiest, most beautiful little girl you will ever meet!!! A shining star and we are so amazed that we are her parents!
Lucy and Alan Johnson