Dare to do something extraordinary
Following a diagnosis of Spina Bifida at the age of 1, Abigail has experienced many changes and overcome a number of hurdles in her young life. Despite her condition, Abigail leads an active life swimming at county level, dancing competitively, skiing regularly (and leaving her Mum and Dad behind!), as well as doing brilliantly in school athletics. She now faces a new and unique challenge as she plans to go on an Asian adventure to support a local community in Sri Lanka.
Here is Abigail’s story:
I’m nearly 15 now, but my journey began in May 2003. When I was born the doctors and my parents noticed a red fatty bump on my lower back. They thought that it was a strawberry birth mark and was nothing to worry about. By the time I was 1 years old, I was already walking and still unaware of how life was about to change. My Mum and Dad had expected the strawberry mark to have gone down by now but it was as large and red as ever, so they made an appointment for me to see a specialist at the hospital. This was when I was referred to a neurosurgeon for an MRI scan. It was then confirmed that I had a tethered spinal cord which is a type of Spina Bifida. The hospital did not want to rush into operating on me but then I started to get poorly – I was not eating, I was losing weight and had an extended tummy. My Mum took me to the GP during Christmas time 2004, and the doctor made an appointment for me at the hospital. They suspected I had some kind of allergy, possibly to milk.
From that day my life changed dramatically. It was 23rd December 2004 and I was extremely poorly and had very high blood pressure. I was admitted to hospital where I spent Christmas and New Year. The doctors established that I had a neuropathic bladder and that I had some renal scarring as a result of wee going back up to my kidneys. They decided to operate immediately to de-tether my spinal cord and to reduce any risk of further deterioration to my mobility. After 6 hours in theatre the operation was a success, the spinal cord de-tethered and the fatty lump removed. After 1 night in intensive care I moved back to the ward and within a day I was eager to get out of bed to walk around, albeit attached to all my drips!
Recovery was difficult and I returned to theatre 4 more times in as many weeks to address a leak of spinal fluid which is a risk in this kind of surgery, but a lumber shunt was put in and everything soon settled down and I was finally able to go home in February 2005. I was wearing an indwelling catheter so my bladder was continually drained whilst I awaited the next hurdle. The doctors now needed to urgently address my bladder to protect my kidneys from any further damage and I was scheduled for a bladder augmentation and ureter reimplantation in August 2005. After a 2 week recovery in hospital my Mum and Dad learned how to flush my bladder, which needed to be done twice a day for the rest of my life.
I was getting back to a routine and back to nursery. The staff there were trained by a nurse on how to catheterise me. By the time I was 3 and a half, I had learned to catheterise by myself on the toilet which prepared me for school life. In 2007, I started school and was managing my intermittent catheter well every 3 hours. However, my neuropathic bowel was causing lots of problems for me with numerous accidents. When everything else we tried was not successful enough, it was finally decided that I should have antegrade colonic enema (ACE) surgery when I was 5. This is where a piece of appendix is used to make a tube to the top of the bowel so I can flush it through using fluid. Although I hate doing it, and it can take considerable time as well as being quite painful at times, it has completely reduced accidents, which changed my life.
Whilst hospital visits and medical issues could be time consuming, I always tried to keep fit and active. I began dancing at 4 years old and started competing in the junior troupe aged 6. I’ve been involved in lots of friendly competitions as well as All England dance festivals. Nowadays, I am a member of the senior troupe, and have several solos, duets and a trio that I compete with. I also started skiing aged 5 on a trip to Lapland, and have kept it up since. Swimming became a passion as soon as I was able, and I started competing in the Hertfordshire swimming league when I was 9 years old. I was also picked to swim at county level for the girls relay team.