{"id":4928,"date":"2011-12-23T11:39:12","date_gmt":"2011-12-23T11:39:12","guid":{"rendered":"http:\/\/paulvallely.com\/archive\/?p=4928"},"modified":"2012-03-06T12:02:33","modified_gmt":"2012-03-06T12:02:33","slug":"4928","status":"publish","type":"post","link":"https:\/\/paulvallely.com\/archive\/?p=4928","title":{"rendered":"‘We want to enjoy every moment’"},"content":{"rendered":"

\"\"<\/a>The giant card behind the sofa says Baby\u2019s First Christmas<\/em>. But the parents of six-month-old Ellie Taylor \u2013 who lies, eyes sparkling, with a smile of sheer joy spreading across her little face \u2013 know all too well that, in their case, this is all too likely to be their baby\u2019s last Christmas.
\n 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.<\/p>\n

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. \u201cShe wasn\u2019t kicking so much when I changed her nappy,\u201d he recalls. \u201cIt thought she was just getting more relaxed, but my parents said something was not quite right\u201d.<\/p>\n

The couple, both just 22-years-old, took Ellie to see the health visitor. \u201cShe looked really worried and called the doctor in right away,\u201d Yasmin says of a moment that is burned into her memory. \u201cWe thought it was something to do with the broken collar bone; that some nerves were trapped or something.\u201d But the GP sent them to the local hospital. \u201cThe paediatrician there did a \u2018floppy baby\u2019 test. He placed her tummy on the palm of his hand. \u00a0She didn\u2019t attempt to hold her head or legs up.\u201d<\/p>\n

He wanted more tests done, says Dale, \u201cbut he wouldn\u2019t tell us what he was testing for. He didn\u2019t seem bothered about her shoulder. So we went back the next day with my Dad\u201d. This time the paediatrician sent them immediately to see a consultant neurologist in Southampton. He told them the baby had spinal muscular atrophy (SMA).<\/p>\n

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. \u201cShe\u2019ll never sit up,\u201d says Yasmin. \u201cIt comes from a mutation of a gene called the SMN gene,\u201d adds her husband. \u201cOne 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.\u201d<\/p>\n

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. \u201cShe\u2019s so sociable,\u201d says her mum. \u201cShe loves people. She smiles at everyone.\u201d<\/p>\n

It is as if she makes up for her inability to move much with the intensity of her gaze. \u201cShe strokes your face in bed with little movements of her arm from her elbow which she can manage,\u201d Yasmin says. \u201cAnd she likes holding small light toys,\u201d Dale adds, brandishing a tiny wiggly rubber snake before placing a flashing duck on the baby\u2019s chest. Ellie smiles.
\n Baby milk runs from an automatic feeder through a tiny tube inserted into the smiling child\u2019s nose. \u201cShe used to suck her thumb but since she got the tube she has stopped,\u201d her dad says. \u201cShe can\u2019t suck any more. She can\u2019t even swallow. So she watches any movement in the room.
\n 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. \u201cWe have a suction machine that we have to use to clear her airways,\u201d says Yasmin. \u201cWhen we first got it we used it once or twice a week; now it\u2019s several times a day. She can\u2019t cough. She need physio on her chest. She goes blue all the time; at least once a day. You can\u2019t cuddle her like a normal baby. \u00a0She is sick every time you hold her upright so you can\u2019t put her head on your shoulder as we could at one time.\u201d
\n <\/strong>The little child cries weakly, a hoarse whisper of a cry. \u201cShe\u2019s uncomfortable,\u201d Yasmin says, shifting her daughter\u2019s position. \u201cHer cry is so tiny you can\u2019t hear her if you\u2019re not in the room. Because she chokes silently you can\u2019t leave her in a room on her own for even a few minutes.\u201d At night the couple use a monitor that fits over the baby\u2019s 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.<\/p>\n

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\u2019s Trust, which specialises in spinal\u00a0muscular atrophy. But practical and emotional support is provided by Dawn Pond, 40, a family support worker with \u00a0Rainbow Trust Children\u2019s Charity, one of the three groups being supported by Independent<\/em> readers in our Christmas appeal this year. \u201cDawn plays with her so I can get some housework done or have a shower,\u201d Yasmin says. \u201cShe needs stimulating all the time. She gets bored very easily\u201d.<\/p>\n

\u201cI\u2019ve been around for half of Ellie\u2019s life now,\u201d says Dawn. \u201cYou 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\u2019m at the end of the phone 24\/7 if she needs me\u201d<\/p>\n

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\u2019s last Christmas can be a particularly effective way of helping families live with grief.<\/p>\n

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. \u201cThey have been really understanding at work. They\u2019ve been brilliant,\u201d he says. \u201cThey know I\u2019ll need a lot of time off when she dies,\u201d 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.<\/p>\n

\u201cShe went into hospital with a cold recently,\u201d he recounts. \u201c 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.\u201d<\/p>\n

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\u2019s challenges rather than being confronted with the trauma of looming death. \u201c We\u2019ve decided we don\u2019t want her on a ventilator, even though she could survive for much longer on one,\u201d he says. \u201cIt\u2019s about quality of life.\u201d<\/p>\n

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. \u201cWe disinfected her hands afterwards,\u201d Dale says. \u201cPerhaps that wasn\u2019t 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.\u201d They have taken her to the beach to see the wild and windy sea.<\/p>\n

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. \u201cMy sister couldn\u2019t come in last night when we had Ellie\u2019s six-month birthday party,\u201d 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.<\/p>\n

Among the guests were several other babies Ellie\u2019s age. \u201cShe loves chatting to other kids,\u201d Yasmin says. \u201cThey lie next to one another and she chats and squawks all the time to them.\u201d<\/p>\n

On the wall is a ceramic plate fired from clay imprinted with Ellie\u2019s 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.
\n Next, they know, will come breathing support \u2013 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. \u201cWe\u2019d like the support of professionals, emotionally as well as practically,\u201d says Dale, \u201cbut the hospice is a lot more homely than the hospital.\u201d<\/p>\n

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.<\/p>\n

\u201cWe have bought her lots of presents,\u201d says Dale. \u201c We keep seeing things we know she will like and buying them for her.\u201d<\/p>\n

\u201cBut we are not keeping them for Christmas Day,\u201d Yasmin adds. \u201cWe give them to her straight away… while she has the time to enjoy them\u201d.<\/p>\n

Two months after this article was written Ellie Taylor died.<\/em><\/p>\n

<\/strong><\/p>\n

.<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

The giant card behind the sofa says Baby\u2019s First Christmas. But the parents of six-month-old Ellie Taylor \u2013 who lies, eyes sparkling, with a smile of sheer joy spreading across her little face \u2013 know all too well that, in their case, this is all too likely to be their baby\u2019s last Christmas. Ellie seemed […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[38],"tags":[267,11,390,391],"class_list":["post-4928","post","type-post","status-publish","format-standard","hentry","category-society","tag-charity","tag-children","tag-independent-christmas-appeal","tag-spinal-muscular-atrophy"],"_links":{"self":[{"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=\/wp\/v2\/posts\/4928","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=4928"}],"version-history":[{"count":9,"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=\/wp\/v2\/posts\/4928\/revisions"}],"predecessor-version":[{"id":4932,"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=\/wp\/v2\/posts\/4928\/revisions\/4932"}],"wp:attachment":[{"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=4928"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=4928"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/paulvallely.com\/archive\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=4928"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}