‘We want to enjoy every moment’

The giant card behind the sofa says Baby’s First Christmas. But the parents of six-month-old Ellie Taylor – who lies, eyes sparkling, with a smile of sheer joy spreading across her little face – know all too well that, in their case, this is all too likely to be their baby’s last Christmas.
Ellie seemed healthy enough when she was born. There were some complications with the birth, not least that a forceps delivery damaged her shoulder inducing a paralysis called erbs palsy. But, at first, everything seemed well, thought her mum, Yasmin, who had just finished three years at university, training to be a mental health nurse. She had even begun to think ahead to when she might return to do the odd shift in the profession for which she had just qualified.

But after a few weeks her partner Dale, a mechanic at the BMW garage in Salisbury where the couple live, observed that the baby seemed to be moving a little less. “She wasn’t kicking so much when I changed her nappy,” he recalls. “It thought she was just getting more relaxed, but my parents said something was not quite right”.

The couple, both just 22-years-old, took Ellie to see the health visitor. “She looked really worried and called the doctor in right away,” Yasmin says of a moment that is burned into her memory. “We thought it was something to do with the broken collar bone; that some nerves were trapped or something.” But the GP sent them to the local hospital. “The paediatrician there did a ‘floppy baby’ test. He placed her tummy on the palm of his hand.  She didn’t attempt to hold her head or legs up.”

He wanted more tests done, says Dale, “but he wouldn’t tell us what he was testing for. He didn’t seem bothered about her shoulder. So we went back the next day with my Dad”. This time the paediatrician sent them immediately to see a consultant neurologist in Southampton. He told them the baby had spinal muscular atrophy (SMA).

SMA is a disease in which nerve cells in the spinal cord die off. Muscles become gradually weaker. Ellie had SMA1, the most severe type. “She’ll never sit up,” says Yasmin. “It comes from a mutation of a gene called the SMN gene,” adds her husband. “One in 40 people are carriers. Yaz and I both are, as it turns out. The consultant said he gives Ellie up to a year to live.”

Looking at the child it is hard to believe. She is lying on a sheepskin rug on the sofa. When I say hello to her she fixes my eyes with hers and a smile slowly blossoms in response to mine. “She’s so sociable,” says her mum. “She loves people. She smiles at everyone.”

It is as if she makes up for her inability to move much with the intensity of her gaze. “She strokes your face in bed with little movements of her arm from her elbow which she can manage,” Yasmin says. “And she likes holding small light toys,” Dale adds, brandishing a tiny wiggly rubber snake before placing a flashing duck on the baby’s chest. Ellie smiles.
Baby milk runs from an automatic feeder through a tiny tube inserted into the smiling child’s nose. “She used to suck her thumb but since she got the tube she has stopped,” her dad says. “She can’t suck any more. She can’t even swallow. So she watches any movement in the room.
Ellie is inexorably, but unmistakably, deteriorating. Two months ago she was feeding happily from a bottle; now she has to be fed through the tube up her nose. “We have a suction machine that we have to use to clear her airways,” says Yasmin. “When we first got it we used it once or twice a week; now it’s several times a day. She can’t cough. She need physio on her chest. She goes blue all the time; at least once a day. You can’t cuddle her like a normal baby.  She is sick every time you hold her upright so you can’t put her head on your shoulder as we could at one time.”
The little child cries weakly, a hoarse whisper of a cry. “She’s uncomfortable,” Yasmin says, shifting her daughter’s position. “Her cry is so tiny you can’t hear her if you’re not in the room. Because she chokes silently you can’t leave her in a room on her own for even a few minutes.” At night the couple use a monitor that fits over the baby’s toe or finger to record her heart rate and the oxygen saturation levels in her blood. An alarm goes off if they fall below a certain point.

During the day the young mother relies on the help of others to free her for a few moments to attend to personal or household matters. Special baby equipment has been provided by a charity called Jennifer’s Trust, which specialises in spinal muscular atrophy. But practical and emotional support is provided by Dawn Pond, 40, a family support worker with  Rainbow Trust Children’s Charity, one of the three groups being supported by Independent readers in our Christmas appeal this year. “Dawn plays with her so I can get some housework done or have a shower,” Yasmin says. “She needs stimulating all the time. She gets bored very easily”.

“I’ve been around for half of Ellie’s life now,” says Dawn. “You build a relationship and provide some time, especially when her partner and parents are at work during the day, when Yasmin can switch off for a couple of hours. And she knows that I’m at the end of the phone 24/7 if she needs me”

In 2011 Rainbow Trust supported 49 families through the death of their child and a thousand families who have children living with life-limiting or terminal illnesses. Creating special memories at a child’s last Christmas can be a particularly effective way of helping families live with grief.

Help from grandparents and Dawn mean that Dale can continue to work fulltime at the BMW garage, where his employers have been very generous in allowing him time to tend his poorly child. “They have been really understanding at work. They’ve been brilliant,” he says. “They know I’ll need a lot of time off when she dies,” he adds with an apparent matter-of-factness which reveals how much growing up this young man has been forced to do in the past six months.

“She went into hospital with a cold recently,” he recounts. “ The doctor said that she would probably get over it but that she could deteriorate. She will probably die in the end from a chest infection. He said we needed to think about end-of-life planning.”

That is a cold piece of medical speak for what this terribly young couple have had to put themselves through at an age when they should be blithely enjoying life’s challenges rather than being confronted with the trauma of looming death. “ We’ve decided we don’t want her on a ventilator, even though she could survive for much longer on one,” he says. “It’s about quality of life.”

The couple are anxious to give Ellie as many quality experiences as is possible within her limited capabilities. Last Sunday they took her to a rare breeds farm and helped her to stroke a rabbit. “We disinfected her hands afterwards,” Dale says. “Perhaps that wasn’t terribly safe but it was something we wanted her to experience. You have to work out whether you want to bubble-wrap her life or experience things.” They have taken her to the beach to see the wild and windy sea.

But in other areas they take no risks. They check to make sure that visitors do not have a cold before they are allowed into their Salisbury maisonette. “My sister couldn’t come in last night when we had Ellie’s six-month birthday party,” Dale says. The present is precious when the future is so certain. There may be no first birthday party for Ellie so the Taylors celebrate what they can, with cake, candles, balloons and home-made Six Month Birthday cards that no shop would ever sell.

Among the guests were several other babies Ellie’s age. “She loves chatting to other kids,” Yasmin says. “They lie next to one another and she chats and squawks all the time to them.”

On the wall is a ceramic plate fired from clay imprinted with Ellie’s footprints aged 10 weeks. Among the photos is one of the baby in the pumpkin outfit Yasmin bought her for Halloween. Yasmin and Dale are determined to cram in as much as they can while they have the time, storing up memories for when she is no longer here. Baby Ellie is only here on loan.
Next, they know, will come breathing support – a tube to blow oxygen up her nostrils, at night to begin with, then round the clock. Their daughter will die, they plan, in a hospice called Naomi House where they once took her for hydrotherapy which she is no longer up to enjoying. “We’d like the support of professionals, emotionally as well as practically,” says Dale, “but the hospice is a lot more homely than the hospital.”

But before that comes Christmas, which they have planned in detail. Ellie lies on her rug in a little Santa outfit she has donned for our photographer.

“We have bought her lots of presents,” says Dale. “ We keep seeing things we know she will like and buying them for her.”

“But we are not keeping them for Christmas Day,” Yasmin adds. “We give them to her straight away… while she has the time to enjoy them”.

Two months after this article was written Ellie Taylor died.

.

Follow