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Katherine Taylor's 5-year-old daughter Lauren was born with Williams syndrome, a rare genetic condition that causes growth and developmental delays, health problems and distinctive facial features. People with the syndrome also tend to have very social, outgoing personalities and take an extreme interest in others. Taylor, who lives in Barnsley, England, shared her story with A. Pawlowski.
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Lauren is our only child. We go to medical appointments and have to tell the doctors and the nurses what Williams syndrome is because even they have never heard of it.
We had fertility treatments, so conceiving her was a miracle in itself. During the pregnancy, we went for a 24-week scan and when the sonogram lady was taking measurements of Lauren, she realized they were looking a little bit small. The rest of the pregnancy was quite tinged with worry as the doctors said that something was wrong and they didn’t know what.
We then got to week 36 of the pregnancy, I went to the hospital for a routine check and my blood pressure went sky high. The next day the doctors said we had to do a cesarean section right away.
When Lauren was born, I literally got to see her for a few seconds before she was taken up to the intensive care unit. She weighed 3 pounds and 12 ounces, so she was really tiny. We had to stay at the hospital because some nights, the doctors didn’t think she would make it. But after nine days in intensive care, the little fighter that she is, she pulled through.
She was diagnosed with Williams syndrome at 4 months old. We didn’t have a clue what it was. We didn’t know where to turn, what to do, what it meant for Lauren, what it meant for us as a family. We were just on our own, basically.
The doctor gave us the website of the UK Williams Syndrome Foundation. We contacted them for advice and support and help, and they have been wonderful.
There are lots of medical things with Williams syndrome. She has a heart condition — branch pulmonary stenosis. She has hyper-sensitive hearing, sleep problems and feeding issues. Her mobility is affected and she’s got development delays. She’s seen by about eight specialists.
The nice thing is that she’s very, very sociable. She has no concept of stranger danger so everybody, to Lauren, is her friend and she instantly wants to get to know people and say hello. It can take us a while to get around the supermarket or the store because straight away, she’s trying to reach out to people and say hello or high five them. She just loves getting feedback from people and having a “hello” back. A lot of them are very much captivated by her and her little smiling face. She’s a delight when it comes to meeting people.
Stranger danger does worry me; it is very much in the back of my mind. As she gets older, there is that seriousness of instilling into her that it’s not appropriate sometimes. She’s never left on her own, there’s always somebody with her — it’s something we’re very conscious about.
Children with Williams syndrome have a lack of melatonin, which tells you when it’s time to go to sleep. Lauren, from the time she was a baby, never just went to sleep. She had to be nursed constantly and rocked and held and comforted.
When she got to the age of 2, we were sleep deprived and didn’t know where to turn. Then we were told about melatonin tablets. Lauren gets a tablet each night that sends her off to sleep. Unfortunately, it doesn’t keep her asleep so Lauren can be awake and unsettled through the night. At school, she can be very tired throughout the rest of the day.
Children with Williams syndrome also have many problems with eating. Lauren still likes a soft diet, so she can’t manage things like chicken or meat. She’d rather have mashed potatoes. She still has to have calorie-enhanced milk to get that weight on. These children are very slight; they’re very tiny. So it is a struggle every day trying to get her to manage to eat the appropriate things to make her healthy and strong.
She has to have special boots she wears to school that keep her a little bit more stable than normal shoes.
Her speech is probably at the level of a 2-year-old. Her favorite word is “hello” and her favorite thing at the moment is singing “Happy Birthday.” She loves to dance and sing.
Children with Williams syndrome have a real affinity for music, but they’re very sensitive to noise. When Lauren was a baby, she used to hate it when somebody sneezed or coughed. She still doesn’t like it if a motor bike or a police siren goes by — she can get very distressed at that. Or even if somebody’s in the garden with a lawn mower or power tool.
We don’t know what the prognosis is as she gets older. Through the foundation, we’ve been able to meet many Williams syndrome families. It’s through them that we can see and learn the things that Lauren maybe will and won’t be able to do. A lot of Williams adults can be independent, but I know a lot are still at home with their parents as their care givers.
I’ve had to take a work break because there are so many appointments Lauren has to attend. The condition means tiredness, sleep deprivation, stress and worry for the family.
But I love seeing her face, seeing her smile and just seeing her develop — how much she’s advancing each day. Her picking up a toy or learning a new song or even learning a sentence, it’s just a massive milestone for us and it’s a massive achievement for Lauren.
We want a long and happy life for her and as normal life as Lauren can have.