Where to begin? I have sat looking at the screen, mulled it over in my head and I'm still no clearer so I am just going to start and see what happens!
'Headlines' have asked me to write a piece about our daughter Hannah who sadly died at the age of 23 in November 2014 after a very tough 12 months in and out of hospital including a long stay in Intensive Care at the National Neurological Hospital in London.
Hannah was born with Pfeiffer syndrome with a clover leaf shaped skull. A surprise to all including the medical staff at Freedom Fields Hospital in Plymouth. At 5 days old Hannah, her father and I walked up the steps of the old main entrance of Great Ormond Street Hospital totally unaware that was to become 'home' for the next 19 or so years. So many of you who are reading this probably know all too well that what followed was a steep, steep learning curve. In the days and years that followed surgery after surgery, CT and MRI scans and countless other assessments and tests and visits for check-ups. At 6 weeks Hannah had the first of four tracheostomy operations that was quickly followed by a VP shunt. Back at home in Cornwall at that time our 3 year old son was being looked after by his doting grandparents. I continued to stay up in London with Hannah while her Dad returned to work as a teacher and to be with Josh.
As a baby and a young toddler Hannah underwent many operations but always bounced back a true fighter and showed more than an extremely stubborn side that developed into resilience, tenacity and truly amazing willpower. We made great friendships with other families going through similar experiences, some far worse than ours, which helped to realise you weren’t alone as you passed the hours sitting around on the ward. As Hannah became older these friendships became very important to her. GOSH always tried to organise Hannah’s visits at similar times as her very special friend Sasha Gentle. These two girls caused mayhem on the ward playing terrible pranks on the nurses and doctors. Photos at the time show them posing behind the nurses’ station as ‘Charlie’s Angels’, of building dens in the play room and the sound of fits of giggles.
By the age of 11 already wearing a bone anchored hearing aid, Hannah’s deteriorating eyesight meant that she was registered blind as well as deaf. It was at this point at transition to Secondary school that she, and we, decided she needed more specialist help with her education. Hannah transferred to the West of England School for children with little or no sight in Exeter. Here she was introduced to swimming and art which became her two great loves and also to her ever faithful guide dog Bella.
She left school with 8 GCSEs with an A in art. An unbelievable achievement considering all of the surgery she underwent during this time including the RED frame surgery which also meant another tracheostomy. After her GCSEs Hannah decided she wanted to go to the local Sixth Form to study A levels where her three siblings attended. It was not an easy couple of years for Hannah and looking back this is when her health really became troublesome, resulting in her sitting her A level art in bed on Tiger Ward at GOSH. She undertook this exam on a real cocktail of pain killers and due to the terrible eye pain she was suffering wore a blindfold most of the time to protect her eyes from the light. However, this experience of managing pain triggered her fascination with other artists that had painted under the influence of painkillers and other medication.
These were difficult years for Hannah though. She had to be fed first by a TPN line and then a PEG. She was diagnosed with anorexia which was complicated by her having digestion and gut problems too. At this time, she was living at home with her younger two siblings, Lamorna and Oliver. Her older brother Josh was away in Newcastle at University. They were an amazingly strong unit, very protective of their sister and Hannah protective of them but they also had the normal sibling tiffs and squabbles! There was only 14 months between the girls so they were like twins, they understood each other intuitively. With a traccy in place Hannah found it difficult to speak clearly in primary school, but Lamorna always understood her and explained to others what she was trying to say. Even in the later years when Hannah was in ICU and could only mouth words silently, it was Lamorna we turned to for translation!
Hannah once again bounced back and started a Fine Art Degree in Plymouth University at the College of Art and Design. Her older brother taught her to climb on indoor climbing walls and sail in a local river. No mean feat when without your Bone Anchored Hearing Aids, you are totally deaf! And Oliver became her artist’s aide. In her second year she decided she wanted to try living away from home and be a 'real student'. A brave decision and with her direct payments she employed carers to help her to live independently and moved into a flat walking distance from her studies. Sadly, ill health meant she had to move back home but her art was really starting to take off so we built what we fondly call the 'Shed' in the garden. This was her space where she could throw brushes and canvases, brew a cup of tea and be as independent as possible, but above all paint, paint, paint.
In September 2014 while visiting hospital for a routine Speech and Language appointment at the National Neurological Hospital, Hannah collapsed and was whisked into ICU with an illness that turned into double pneumonia and various other complications. She was in a coma for two weeks, lost the ability to swallow and to speak and developed a weakness in her right hand side. She was in ICU for 3 months, underwent further major surgery but fought back and was home for Christmas........just! Her father was stopped crossing the Tamar Bridge into Cornwall on Christmas Eve bringing her home. After much discussion Hannah recognised that returning to her studies would not be possible. She hated the fact that she had to give in to her health but she was constantly in a great deal of pain and was now back on a PEG feed for many hours of the day.
Around this time her grandmother introduced her to a wonderful Italian lady, a retired teacher and a close friendship began. Alba recognised immediately that Hannah needed a project, needed to be busy and so began the writing of Hannah’s book, 'Invisible Struggle'. Hannah wanted to write a book to help and inspire other children and young people like herself. She had been through some very difficult times, particularly during her secondary education. She felt that there was very little support for teenagers and young people and she wanted this to be recognised and to get better support for others. Hannah began to write and produce poetry, some of her most vibrant and captivating art was painted in these months. With her loss of movement no longer allowing use of a paintbrush, she painted with a palette knife or wood.
See past the scars
I can laugh and smile too.
See past the disability
I have a brain too
Do you really care?
Or is that a hard question to ask?
With each stare or with each comment
You will always open old wounds.
If you see me wobble
Or if I stumble
Will you help me
or will you let me suffer?
After reading this poem,
I hope you know
Why normal is a place where I have no wish to go.
In October 2014 Hannah became very ill again but this time administering a general anaesthetic was not an option. She bravely decided enough was enough staying in hospital, so we brought her home to her family and her ever faithful dog for a final few days and she quietly slipped away. The reason for telling you this is that, following her death the generosity of friends and family meant we could publish her book AND start Hannah’s Fund.
Hannah’s Fund has been set up to provide counselling or psychotherapy to those with or affected by Craniosynostosis. There is no age limit and the service aims to be accessible nationwide, although this does depend on the availability of a psychotherapist in some areas. Hannah’s Fund will cover the cost of the sessions and although there is no limit to the number of sessions there will need to be regular reviews.
If you would like further information or would like to make a referral, please go to the website www.hannahlindfield.co.uk.
The Headlines Family Weekend is our main event, which we host annually and generally runs from Saturday morning to Sunday lunch time.Please click here for more information.
Donations & Sponsorship
Headlines is almost entirely funded by donations. Continued financial support is essential to maintain the work of Headlines.Please click here to find out how you can help.