Liam Watson had his first life-saving operation at just 14 hours old. He has to take 36 pills a day to help treat his cystic fibrosis and yet he is a budding ice hockey star. Catherine Scott reports.
WATCHING Liam Watson swoop across the ice he seems just like all the other ten-year-olds playing for the Sheffield ‘Swampfrogs’.
However Liam is not like the other members of the Sheffield Ice Hockey Academy under 12s team. Liam underwent his first life-saving operation at just 14 hours old. He has to take 36 tablets and undergo one and half hours of physiotherapy every day. The ten-year-old from Wakefield suffers from the genetic condition cystic fibrosis, which means he has problems with his breathing and digestion.
Taking part in the highly energetic and fast paced sport is not only enjoyable, it also helps Liam to manage the cystic fibrosis which affects the internal organs, especially the lungs and digestive system making it hard to breathe and digest food.
“I enjoy ice hockey and train twice a week, it’s an exciting sport and it’s also good for my health. I like being active, so I also do roller hockey and have just started speed skating,” says Liam, whose big brother Kyle, 13, and just been chosen for the England under 14s ice hockey squad.
It wasn’t until Liam was born that his parents Jayne and Rob realised anything was wrong.
“As with Kyle, I’d had a perfect pregnancy although a month before Liam was due he seemed to stop moving. I went to hospital and they told us he was in distress and so I had an emergency Caesarian.”
Kyle was born at Doncaster Royal Infirmary weighing 6lb 11oz. But doctors immediately realised he was a very poorly baby.
“His stomach was enlarged and doctors said he would need an immediate operation to remove part of his intestine.”
One in ten babies with CF are born with meconium ileus at birth or within the first few days of life. Liam was rushed to The Children’s Hospital, Sheffield, while Jayne was forced to stay in hospital in Doncaster. The Watsons’ situation was further complicated as Kyle was aged just two and half.
“It was all very traumatic. I had to stay in hospital for four days before I could travel to see Liam,” recalls accountant Jayne.
Liam was in hospital for four and half months and throughout that time Jayne and Rob had to juggle being with Liam and looking after Kyle.
“It was a nightmare. We wanted to be with Liam but we also wanted to keep life as normal as possible for Kyle,” says Jayne.
“We would take it in turns to be with one or other of the children and then at weekends we’d all go up as a family and stay in a special room in the hospital. One of us would stay with Liam while the other would take Kyle for a walk around the gardens. All we wanted was to be able to take him home, but just when he seemed to be getting better, he would suddenly start to get worse again.”
Liam underwent two further operations and then developed kidney problems and the Watsons were warned he may have to be transferred to Leeds, but in the end his condition improved enough so they could take him home.
“I had begged and begged the doctors to let us take him home. Kyle kept asking when his little brother was coming home, he just didn’t understand, it was heartbreaking. I said I was prepared to do anything to make it happen. So I had to learn to give Liam intravenous drugs and how to change his nasogastric tube which fed him and in the end they said we could take him home,” says Jayne.
The Watsons were warned Liam could have CF shortly after he was born and a blood test confirmed their fears.
CF is one of the UK’s most common life-threatening genetic disorders. The Children’s Hospital, Sheffield treats over 150 children with CF each year.
In the UK five babies each week are diagnosed with CF and two young people die every week.
Through research, better understanding and treatment of Cystic Fibrosis, life expectancy has increased to around 40 years. In 1964 a child was expected to live to five years.
Because both Jayne and Rob are carriers of the condition both Kyle and Liam had a one in four chance of having CF.
Jayne admits that when Liam was little the couple did worry about what the future held for Liam and what further operations he might need. “The early days were hard. We thought about what might happen, but we have learnt to just get on with it and enjoy it while it lasts.”
When Liam was about a year old the couple also had the difficult decision about whether Jayne should return to work full-time.
“I spoke to the Cystic Fibrosis Trust and they said what would I have done if Liam hadn’t had CF and I said I would have gone back to work and they advised me to do the same.”
Now Jayne works full-time and her husband Rob has gone part-time. It’s an arrangements which suits the family dynamics.
“When not working, our entire lives are about the boys. Ferrying them around to various sporting activities. We are actually looking for another sport for Liam as well. The more he keeps active the more healthy he will stay.”
Taking regular exercise is very important for children with CF in order to strengthen their lungs.
Ice hockey is such a vigorous sport, it gives Liam’s lungs an intensive workout which is fantastic for his health.
“Liam has regular health checks including tests of his lungs. We found that when he’s playing ice hockey his lung capacity is being worked very hard because ice hockey provides short bursts of very intensive exercise which gives the lungs a really good workout. With ice hockey being an indoor sport, the weather doesn’t interrupt his training.”
Patients with CF require 50 per cent more calories than the usual intake, and need to eat a high fat diet. So Liam eats a healthy diet with extra calories.
“As Liam’s getting older he is taking more responsibility for his health. The main thing as a parent is to be organised so that we can fit all the daily treatment around school and sports training. It can be a challenge but we’ve worked out a way of managing the treatment.”
Liam and his family are full of praise for the CF team at the Children’s Hospital, Sheffield.
“The team at The Children’s Hospital is fantastic. We see them regularly and they always provide us with the advice and support that we need.”
Sandra Bott, CF nurse at The Children’s Hospital Sheffield said: “Liam is extremely dedicated to playing sport. It’s really important for patients with CF to exercise regularly as this helps to support their health.”