Helen Smith's Story

About UsHi, I´m Helen Smith, I´m 25 years old, born and bred in Cambridge, UK, and that´s where I live now with my parents. I went to Bath University and graduated in 1997 in Molecular and Cellular Biology with Education. In October 1997 I started a PhD at Hammersmith Hospital in London which is part of Imperial College of Science and Technology.

During Christmas of 1997, which I spent at my Auntie´s in Herefordshire, I had a sore throat. In the night of 26 December I became really ill with breathing problems, vomiting and diarrhoea, fainting, cold extremities, violent shivering and terrible pains in my arms, legs and stomach. Since then I have learned that all of these were the classic symptoms of meningococcal septicaemia. I have been told since that I probably had a rash. However, the Doctor only diagnosed flu!

Next morning I somehow managed to travel back to Cambridge in spite of the pain I was in and the fact that I was still suffering from severe sickness and diarrhoea. On the evening of the 27th I was still in severe pain and so my mother called another Doctor, who diagnosed food poisoning and gave me a painkilling injection. By this time I had developed what looked like large blackheads on my face but I just thought they were nasty spots so I did not mention them to the Doctor. The injection did not do any good so later that evening another Doctor was called. He fortunately realised that I might have meningococcal septicaemia and gave me an injection of antibiotics. An ambulance was called, and for the last time I walked with my own legs out of our family home to get on board for the hospital.

Very soon after arriving at Addenbrooke´s hospital I was in a coma in intensive care. My family were told to expect the worst. Everything in my body shut down: my breathing failed, my kidneys failed, my heart needed stronger and stronger drugs to maintain any blood pressure, warm air was pumped over me to maintain my body temperature, even my eyes needed protection to stop them drying out. I was totally unaware of what was happening but I have since been told by members of my family that I went the colour of a black bruise especially at my extremities as a result of the septicaemia. My sister offered to donate her skin and one of her kidneys but fortunately this was not necessary.

Amputations

I was in intensive care for over a month. In this time my legs were amputated at the knee, my left hand at the wrist and the fingers of my right hand. I had lots of skin grafts over most of the remainder of my legs, the skin was taken from my back and I returned from theatre bandaged from head to toe. As I did not have enough skin for all the grafting to be done in one go, I had to wait for the skin to renew on my back, and then it was taken again.

The plastic surgeons tried to save some of the function in my right hand by grafting it to my stomach for 4 weeks. This left me with a paddle that I found unsightly and not very useful. Both my arm amputations were at the wrong length for any kind of prosthesis (or so I was wrongly told at that time) so I was left with no grip that is the most essential function of a hand. Another problem with the paddle was that it never healed due to an MRSA bone infection, and so in November I decided to have it amputated at the correct length for prosthesis. My right leg was also infected with MRSA and unfortunately had to be shortened to an above knee.

Prosthetics

In December 1998 almost exactly a year after losing my limbs I was fitted with my first set of artificial legs and a split hook for my right hand. After the initial elation of actually standing up again had passed, I realised that what I had been given was way below acceptable standard. Knowing that there had to be better I began the search for the best prosthetics in the world. Luckily I did not have to look far and found a company in Ringwood called Dorset Orthopaedic who made life-like limbs and even fitted the models Heather Mills and Aimee Mullins with their legs.

I approached my GP with the information and he agreed that legs like that were just what I needed, but unfortunately the Health Authority on advice from the hospital decided that what I had been given was perfectly suitable for my needs! I knew they were wrong and my task now was to change their minds, after all I only asked for the basic funding to be transferred, I never asked that any extra be spent on me. I decided the only way to make the hospital realise how terrible their prosthetics were was to have a second opinion so I arranged an initial assessments with Dorset Orthopaedic in February. David the prosthetist who I saw was so appalled by my limbs that he had to fetch Bob Watts, the chief prosthetist, to show him. We were all sitting there looking at what I had been given and laughing because they were so bad, but then we suddenly stopped as Bob said " but you have to wear them". Bob Watts and David pointed out all the failings of my limbs and how they were actually damaging me and armed with this I wrote again to the health Authority feeling confident that this time they would find it difficult to refuse as the hospital had done such a terrible job. I couldn´t have been more wrong, not only did they refuse, but they fought back by calling me "vain and impatient".

The day I got the letter of refusal I happened to have a phone call from Amanda Goodman who is a TV presenter for Look East. She had phoned, as she wanted to do my meningitis story. Instead she got an earful on how awful my limbs were. She was brilliant and the next week out went my limb battle story on the news with backing from my local MP Anne Campbell. The day after this my telephone rang non-stop with papers and TV shows wanting my story. As a result of this I was featured in The Daily Mirror, The Express, Woman magazine, "That´s Esther", "This morning" with Richard and Judy, Cosmopolitan magazine and some German TV programs. As a result of the Look East story a local businessman offered to pay for a set of limbs so this meant I could finally make my appointment with Dorset Orthopaedic in June 1999 for a full set of life-like limbs. The limbs I got were fantastic, not only did they look like real limbs but they were comfortable and I could walk, dance, paint, and cook. After a year of campaigning the NHS has agreed to pay some of the costs of my limbs.

Now and the Future

I had always planned to finish the PhD I had started but due to the many difficulties this produced I have decided not too. Whilst I was pondering my future I was offered the chance of training to be a news reporter for Anglia television and I start this job as soon as my new house is ready. There is not one day when I wish this terrible illness had never happened but I think that more doors of opportunity have been opened because of this illness than have closed.

 

 

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