Two-year-old Zoe's heart could fail at any time… but there is one place she can forget her pain this Christmas
22:12 GMT, 22 December 2012
The evening is freezing, and the December sky is illuminated with countless stars. A gaggle of deliriously excited children waiting with their parents in the gardens of Chestnut Tree House, in Sussex, are wrapped up in woolly hats, gloves and scarves, their faces ruddy with anticipation.
When Father and Mother Christmas step out on to the balcony, it prompts the sort of screaming usually reserved for boy bands. Thousands of similarly joyous scenes are playing out up and down the country at this time of year.
But Christmas for the families here is extra special. Chestnut Tree House is a children's hospice. The children have illnesses that in many cases will mean they'll never reach adulthood. For some, this could be their last Christmas. But this evening is far from sad – and fun, games, laughter and Christmas dinner are on offer.
All smiles: Zoe Granger, who suffers from a rare condition known as Alagille syndrome, with her mother Gemma at Chestnut Tree House children's hospice
The Mail on Sunday was invited to
join in the annual festivities by the hospice and British charity
Together for Short Lives, which supports the UK's 49 children's
hospices, to show that such places are not terrifying, or simply places
where children 'go to die'.
Indeed, I can vouch that there a fewer places I have been where I have found so much love and laughter. When
I arrive in the early afternoon, seven-year-old Toby Nash bounds up to
me. 'I have lost four teeth,' he announces cheerfully. His blond hair is
spiky and he beams as he shows me where the gaps are.
He is a gorgeous little boy, but his face is pale and every now and again he coughs a little. Almost
the moment Toby was born, his mother noticed there was something wrong.
'He was fractious and not feeding,' says Louise, 43. 'An experienced
midwife whisked him away to check him over. Suddenly we had a very sick
Toby has a condition called Hypoplastic left heart syndrome, a rare congenital heart defect whereby the left ventricle (one of the four chambers of the heart) is severely underdeveloped. 'Blood wasn't getting to his heart and he was starting to turn blue. He had three operations but they weren't enough.'
Toby now has a mechanical heart valve,
and a pacemaker to control his irregular heartbeat. He has been on the
transplant list for two years and was temporarily put on chemical life
support – where a drug is administered to keep the heart beating. Weaned
off this gradually, he is at constant risk of infections. It is merciful that children are unable to grasp the gravity of their situation – one small comfort for their parents.
Playtime: Mail on Sunday writer Alice Smellie with Toby Nash at the Chestnut Tree House children's Hospice in Sussex
'He knows he is ill, but he leads a reasonably normal life,' says Louise. 'Because he is on warfarin – which makes you bleed excessively –- if he has a tumble at school I need to be on hand.'
When we meet, Toby has just emerged from a hospital stay for a chest infection. 'There was no question of missing the party,' says Louise. 'Besides, there are plenty of experienced medics here.'
Louise's husband, Lee, 46, a major in the Armed Forces, and his older brother, Elliott, ten, are also at the party. 'Christmas is a bit different these days. I haven't drunk alcohol since Toby was born,' says Lee. 'We have to inject Toby with medication at night, and you can't do that after a drink. I decided to give it up completely.'
The Nash family lives nearby with
Louise's parents. Three years ago, they were referred to Chestnut Tree
House by their community nurse. 'Toby has so much equipment people don't
want to look after him, but we feel safe here.'
'Christmas is emotional for us,' says Louise. 'Every milestone is poignant and we never take them for granted.'
Inside, among the excited children
eating mince pies and cake and playing with toys, is Tandy Hearne and
her five-year-old daughter Sasha, who is having her face painted with a
picture of a snowman.
Somehow, Sasha was starved of oxygen during her birth. Tandy
didn't see her for two hours. 'We had to wait while I delivered the
placenta. When I was finally rushed into intensive care, Sasha stopped
breathing. My first sight of my baby was as she fought for life.'
Light Relief: Five-year-old Sasha with her mother Tandy Hearne in a room lit up with Christmas lights
At eight days old, Sasha, who was floppy, suffering from seizures and had breathing difficulties, was given an MRI, which showed widespread brain damage. 'She has quadriplegic cerebral palsy – a motor condition that affects all four limbs.'
In spite of her multiple health problems, Tandy and her husband Laurence, 40, insisted on taking Sasha home after five-and-a-half weeks to join her siblings – Jake, now 16, Jodie, 14, and Kieran, seven.
'My husband and I asked to be trained in caring for her – she had to be given oxygen and fed through her nose. She had siblings, and it seemed most important to be together as a family. Once we got home, they were able to develop a bond with her – and they adored her unconditionally.'
'They don't think of her as being
different, and she responds to them. They make her laugh by jumping out
at her, and her dad's singing makes her laugh as well.'
Sasha needs 24-hour care. She has
severe digestive problems, is visually impaired, and has epilepsy and
airway difficulties. At night, her feeding tube needs changing every
four hours, and she wakes up a great deal, wanting to be entertained. It must be like having a newborn – but with no end in sight.
'I was so sleep-deprived at one point
last year I had to double-check everything – medication, the wheelchair
restraints, and the doors on her bed. I was barely functioning,' says
They were told by a local nurse about
Chestnut Tree House. 'We were reluctant at first,' she continues. 'We
thought hospices were places where people went to die. But when we
visited, it seemed like such a happy place. She loved the sensory room
[a low-lit room filled with ropes of fibre-optic lights that children
find soothing]. Now we have support from the hospice 14 nights a year
and sleep in the room upstairs while the nurses tend to her overnight.
It makes such a difference.'
A visit from Santa: Rose Phillips gets a Christmas present from Father Christmas at the children's hospice
When I tell Sasha how beautiful she looks, she smiles. 'She could listen to that all day,' says Tandy fondly. In the canteen, I notice two girls dressed as fairy princesses, running around screaming. I am told they are the sisters of a patient.
'A vital part of our role is looking after the family as a whole,' points out Linda Perry, director of children's services at Chestnut Tree. 'A lot of the time the parents are focusing on the ill child, and this can mean resentment and guilt on the part of the sibling. We offer counselling to deal with the complex emotions they may experience.'
I come across a closed door with a plaque above it saying 'stars'. These are the rooms where children can be brought after they have died. Inside, there is a sitting room with a box of tissues on the table, and double doors lead out to a small, private garden. A bedroom contains a specially chilled bed, covered in a patchwork duvet, where the child can lie.
'Sometimes parents carry the children outside and hug them,' says careworker Hayley Phillips, 33.
'WHAT I REALLY WANT IS A GIRLFRIEND'
Hospice services are also for older children and young adults.
I meet 20-year-old Daniel Warren, who has Duchenne’s muscular dystrophy and is staying for a week. ‘You look like Pixie Lott!’ he exclaims. (I don’t.) I am enchanted.
Duchenne’s is a condition affecting about one in 3,600 boys.
A gene mutation causes degenerative muscle weakness, and those with the illness rarely live past 25.
Daniel was diagnosed at just eight months old and has been coming here for eight years.
These days, he spends his time in the teenage section, where there are four bedrooms and a large communal area for watching TV and playing computer games.
He tells me he plans to stay up all night with the other boys.
At ten years old, Daniel lost the ability to walk.
Now he is confined to a wheelchair and barely able to move.
‘What I really want is a girlfriend,’ he confides.
I had spoken to Penny Hoskins the previous day. Five years ago, her son Darren passed away from pneumonia. He had suffered from autism and severe epilepsy from birth. 'We had come to terms with a special-needs child, but he was doing so well – he loved drama and sports, and could feed himself,' she said.
The family were looking forward to his future. 'He would always need support, but it looked as though he could lead a reasonably normal life,' Penny added.
But in 2002, at the age of 14, he contracted a virus that caused him to have fit after fit and his brain was terribly affected. He was unable to walk or talk, and doctors told Penny that another fit could kill him at any time. Chestnut Tree House proved a life-line during his final five years. 'They really cared about him.'
In the summer of 2007, aged 19, his body was too weak to cope with a bout of pneumonia. He died in hospital and was brought to the hospice so his family could say goodbye.
heart is broken,' Penny says simply. 'But Darren taught us how to be
strong and Chestnut Tree House understand that you don't want your child
to be forgotten.'
Two-year-old Zoe Granger is the smallest of the children I meet and has just started coming here. She is dressed in a festive purple tutu and her face is framed with golden curls.
As we take photographs, she murmurs, 'smile, smile', to herself and then toddles off to host a tea party in a toy kitchen. She
has a rare condition known as Alagille syndrome, a genetic disorder
that affects major organs such as the heart, kidneys and liver.
mother, Gemma Granger, 31, says: 'She is so excited about Christmas.
This time is so precious because we don't know what the future holds.'
Gemma and her husband David, 30,
attend Chestnut Tree House for a few hours every month. 'It's the only
place I'll leave her,' says Gemma.
hospice very kindly invited my children, aged four, six and seven, to
attend the party. Had it not been so far from home, I would have loved
to have brought them. As it is, I
drive away into the frosty night desperate to see them, and counting my
blessings, which at the moment seem as numerous as the stars in the
Charity support is vital
Caring for such an ill child is a 24-hour job. With 49 children’s hospices in the UK and an estimated 49,000 children and young adults living with life-limiting or life-threatening conditions, many are not getting the care they need.
‘Each child is allocated 14 days a year at Chestnut Tree House,’ explains Linda Perry, director of children’s services. ‘If there is a crisis, or an end-of-life situation, that is a priority.’
Chestnut Tree House looks after more than 260 children and families. It has ten bedrooms, and there are 20 community nurses helping families at home. The running costs are 2.5 million a year – of which just eight per cent comes from the Government. The rest is from donations.
At this time of year, the hospice provides support so families can spend Christmas together at home.
‘Families want to make the most of their precious time together,’ says Linda. ‘We have nurses on call in case of emergency.
‘If there is a crisis, we can move medical equipment into the house very fast. It gives parents a sense of security.’
If you would like to help, visit: togetherforshortlives.org.uk and chestnut-tree-house.org.uk