A peek inside Abbie King’s wardrobe reveals a baby clothes collection to rival Mothercare.
Barely contained on the long rail hangs one tiny outfit after the next — a pink fluffy jacket sits next to a spotty green baby dress and a gorgeous white and gold angel outfit bought for a Christmas party.
Doll-sized white cotton socks fill her drawers alongside little jeans and pretty skirts. Many items still have the labels on, ‘0-3 months’, ‘3-6 months’.
One in 100,000: Abbie stands on her mother Emma's knee. The youngster, who is two months off her second birthday, has a rare genetic condition called Russell-Silver syndrome which means at this age she is just the size of a six-month baby
A spoilt newborn baby, you may think? Far from it. These clothes, mostly hand-me-downs, have been piling up because Abbie, born 22 months ago, has barely grown to the size of a six-month-old baby.
She suffers from a very rare genetic condition called Russell-Silver syndrome, a form of primordial dwarfism (where the body is smaller than it should be even before birth) which affects only one in 100,000 babies.
Despite being barely 2ft tall and weighing less than 14lb — half what she should at her age — Abbie can walk, laugh, play and throw a tantrum like any normal toddler.
She is a perfectly-formed miniature person — a real-life Thumbelina.
Despite being barely 2ft tall and weighing less than 14lb - half what she should at her age - Abbie can walk, laugh, play and throw a tantrum like any normal toddler
‘When I found out that Abbie wasn’t growing properly, I was terrified she wouldn’t have a normal life,’ says her mother Emma Smith, 29, a former nanny from the Isle of Sheppey, in Kent.
‘But she’s become an independent, cheeky little girl. She gets into all the same trouble as any other toddler, although she probably gets away with more because she’s so gorgeous.’
In response, Abbie, all blonde fluffy hair, big blue eyes and naughty smile, pads into the living room. Her head barely comes up to the arm of the leather sofa. Her hands and size zero feet are as delicate as a baby’s. So how is having this pint-sized child any different to life with a bigger one?
‘It’s silly things you’d never think about,’ says Emma. ‘She’s never had a high chair, because she couldn’t see over the tray. Same with a baby walker, because if her feet touched the ground, she couldn’t see where she was going.
‘It took us 11 months to find her first pair of shoes when she started to walk, because shoes made in her size don’t have a proper outdoor sole — the NHS had to order them from a specialist company in Europe. And she’s so small, I’ve lost her more than once.
'I’ve found her sitting under the sink in the bathroom, in a kitchen cupboard and even getting into the washing machine. She’s certainly going to be very good at hide and seek'
‘I’ve found her sitting under the sink in the bathroom, in a kitchen cupboard and even getting into the washing machine. I’ve hunted round the house in a panic for several minutes. She’s certainly going to be very good at hide and seek — she seems to like small spaces.’
These funny, if slightly alarming, moments are ones that Emma could never have imagined back in 2008. She and her partner of 13 years, David King, 33, a farmer and retained firefighter, longed for a girl to complete their family and to be little sister to their son Josh, then three. So they were overjoyed when Emma fell pregnant that summer.
As Josh had been born weighing a healthy, bouncing 9lb and the pregnancy had been easy, they assumed the second time would be the same. But Emma was hit with heartbreaking news at her 20-week scan.
‘I knew something was wrong when the doctor turned the screen away from me. She asked me whether my dates were definitely right. Then she told me that there were complications.’
The baby had fluid around her heart, and while her head seemed to be developing normally, her arms and legs were much smaller than they should have been.
‘I just burst into tears — it felt like my world had ended,’ says Emma.
Abbie at 15 months with her friend Dylan (and below) who is just five weeks older. Abbie weighs less than 14lb, less than half what she should at her age
Abbie's height has also had an impact on her speech in that as she's so far away from people's faces it is harder for her to read lips and work out how to do it herself
Despite test after test for genetic disorders including Down’s syndrome and diseases such as hepatitis, everything came back negative. The doctors didn’t know what was wrong.
‘Everything else about Abbie seemed to be normal, particularly her brain function. Even a heart specialist confirmed the fluid around her heart wasn’t dangerous, and would disappear before she was born.
Abbie was delivered by Caesarean section at 38 weeks on February 12, 2009.
‘I remember asking David to tell me what she looked like. He called out: “She’s beautiful. She’s little, but she’s fine.” When I first saw her, she was so tiny, less than half the size Josh had been, just 4lb and 16in (40cm) long. She looked so fragile I was scared to hold her.’
'She may have been bigger than many premature babies, but unlike most underweight newborns, the high-calorie formula she was given to speed up her growth didn’t seem to work.
She was gaining weight, but only tiny amounts,’ says Emma. ‘It was so hard to watch, and it put an enormous amount of strain on David and me. We both wondered whether it was our fault. I worried I was doing something wrong, feeding her the wrong thing.
‘I would watch my friend’s children grow month after month, while Abbie barely changed. Even now, aged 22 months, she’s only 26in (65cm).’
After regular unsuccessful visits to the paediatrician, it was only a referral to a genetic team last December that finally brought a diagnosis — Russell-Silver syndrome, caused by a chromosome defect which results in dwarfism.
'We were told a child having Russell-Silver was a lottery - it was something that just happens in a tiny number of cases. There was nothing we could have done to change it'
Despite the shock, the diagnosis was a huge relief for Emma and David.
‘We finally had answers to all our questions,’ Emma says.
‘We were told a child having Russell-Silver was a lottery — it was something that just happens in a tiny number of cases. There was nothing we could have done to change it.’
Far more importantly, while it does cause growth defects, children affected by it can live normal lives — unless problems show up at a very young age. Abbie has an average life expectancy and can be treated with growth hormones from the age of four to give her a bit more height. Without these, her adult height wouldn’t be more than 4ft, but with them there’s a chance she may get to 5ft.
The physical traits of those affected with Russell-Silver include a large forehead, low-set ears and a small, triangular face.
Looking closely now at Abbie, who is quietly doing a puzzle with her five-year-old brother Josh on the carpet, she does have these features, but it only serves to give her a sweet, elfin quality. Unlike her body, her head has grown at a normal rate so is slightly bigger than the rest of her, which caused her to develop a rather strange way of getting around when she became mobile.
‘She never really crawled, but would scoot around with her head on the floor, bottom stuck up in the air,’ says Emma. ‘When I mentioned it to the doctor, he said it was because her head was the heaviest part of her, so she preferred not to lift it. But she’s happily walking around now.’
Abbie’s size makes finding clothes that fit a constant struggle for Emma, who says:
‘She can’t really wear anything with a hood, because if it fits in the body, the hood will only go half way over her head.’
Tops with wider necklines fall off her tiny shoulders. And she has only just moved out of newborn clothes (before that, it was premature baby clothes) into outfits for 3 to 6-month-olds.
‘We celebrate whenever we go up a size,’ says Emma. ‘I have the opposite problem to most mums — she doesn’t get through clothes quick enough. They certainly get a lot of wear.’
Tiny tot: Abbie with her mother Emma, father David and brother Josh, five
And it’s not just clothes — every aspect of life has to be made Abbie-sized. She sleeps in a wooden cot which still looks enormous for her, has a special apple-print booster seat in the kitchen and eats from a purple plastic baby spoon because a regular teaspoon won’t fit into her mouth.
‘She’s going to want to learn to ride a bike soon, but I’m not sure how we’re going to do that. They do make special dwarf bikes, but they cost around £500,’ says Emma.
Food, on the other hand, is not a problem. Abbie eats often, but only small portions.
‘Our doctor told us that, no matter how much we try to feed her, she won’t gain any more weight than her body wants to.’
So how do strangers react to this diminutive girl? Emma says that passers-by, especially women, always comment when they go out. Sadly, it’s not always positive.
‘When I took her to the supermarket when she was a baby, everyone cooed over her and said she looked like a little doll, but they always asked if she was premature. When I told one woman she wasn’t, she said: “Oh, so she’s just a throwback then?” That was the most upsetting thing anyone’s ever said.
‘As she’s got older, people have said “Your baby shouldn’t be eating a sandwich” or “It’s cruel to make that baby walk”. But when I tell them how old she is, they usually look embarrassed.’
'As she’s got older, people have said "Your baby shouldn’t be eating a sandwich" or "It’s cruel to make that baby walk". But when I tell them how old she is, they usually look embarrassed'
On the other hand, children universally adore Abbie, perhaps because she looks like a fairy.
‘I run a mother and toddler group, and they all want to mother Abbie and pick her up,’ says Emma. ‘But she will tell them “no” if she’s not in the mood. Josh is very protective too — he tells people to leave his little sister alone if there’s too much attention.
‘My biggest fear is about when she starts school. She’ll still be very small, because she won’t have started the hormones. I just hope she’s accepted and not treated like a baby.’
Although she may need a specially-bought smaller table and chair for the classroom, you get the feeling that Abbie will be accepted by the force of her personality alone. She is noisy, full of smiles and is a naturally curious, inquisitive child.
‘She’s a little monkey,’ says Emma, as Abbie giggles in agreement, ‘She’s started to enjoy climbing. While I was doing the washing-up yesterday, she managed to climb up on her nappy box, then the sofa, then the coffee table, and was playing with baubles on the Christmas tree.’
Emma feels understandably protective of Abbie because of her size, and how easy it is to knock her over accidentally as she is running around. Her height has also had an impact on her speech.
‘Her speech therapist says that when we are all standing she is so far away from our faces, it’s harder for her to read our lips and work out how to do it herself, as a taller child could,’ says Emma.
But it’s nothing compared to what could have been. Emma has discovered that Abbie is very lucky to have got off so lightly as a Russell-Silver sufferer. Through online support groups for the condition, she has spoken to mothers whose children are very badly affected by it.
‘There are children with the condition who can’t walk at three, and many have problems with feeding so have to have a tube into their stomach. But Abbie is just normal, really, apart from her size. It could have been so much worse.’
Although Emma and David do worry about Abbie’s future, it seems much brighter than it did even a year ago. They have the healthy, happy girl they always wanted — and one who has just as much fun playing in the snow as any toddler, even though her snow suit is slightly on the large side.
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