Cystic fibrosis forces toddler twins apart – in case they pass life-threatening infections to each other, reveals mother
Parents did not realise they were carriers of the lung condition
16:21 GMT, 5 April 2012
Toddler twins Isobel and Alexander love to spend time together – but they must often stay apart in case they give each other life-threatening infections.
Mother Zoe Elliott has to separate them because both her children have cystic fibrosis, which means they are prone to picking up bugs and infections. So if one of them is ill, the other must be kept well away.
The genetically inherited condition affects the internal organs, especially the lungs and digestive system, clogging them with thick, sticky mucus.
Zoe and Steve Elliot with their twins Isobel and Alexander who both have cystic fibrosis
Zoe Elliot, 38, from Nottingham, said: 'In an ideal world, the twins wouldn’t be in the same house because of cross contamination.
'People with cystic fibrosis aren’t allowed to mix, so we have to be really careful.
'When one has an infection, they can’t kiss each other or share anything that they are using or eating from.
'We have to have a strict routine to make sure all of their medicine is taken and that the physio is done, it takes up a big chunk of your day.
'They get bored easily, so we do things like blowing bubbles in water and blowing instruments, as that creates pressure and helps to clear the lungs.'
People with cystic fibrosis struggle to absorb food as the digestive tract gets clogged with mucus, so the twins have to eat a calorie-rich diet.
Zoe said: 'Because they are toddlers, it is an absolute nightmare getting them to eat, Alexander has to have a special fruit juice loaded with calories and supplements.'
Neither Zoe nor her husband Steve had any idea they were carriers for the condition.
Isobel was diagnosed with cystic fibrosis after being born with a blockage in her large intestine.
This is a common problem for children with the condition and she had to have 50cm of her intestine removed. Alexander was diagnosed soon afterwards.
WHAT IS CYSTIC FIBROSIS
CF is one of the UK's most common life-threatening inherited diseases and affects over 9,000 people in the UK.
It's caused by a faulty gene carried by around one in 25 of the population.
If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
Each week, five babies are born with Cystic Fibrosis and two young lives are lost to the disease.
However, improvements in treatments mean half of people with CF will live past 41-years-old.
The pair are set to start nursery soon and extra care will have to be taken to make sure they don’t pick up infections.
Zoe said: 'The problem with cystic fibrosis is that people look perfectly normal on the outside and it is all happening on the inside.
'They are really susceptible to everyday bugs, so if there is a cold going around, they are going to get it.'
One particularly dangerous infection is pseudomonas aeruginosa, which causes chronic and destructive lung infections in cystic fibrosis patients.
The twins are taking part in a trial carried out by the University of Nottingham and doctors in Bristol to find the best treatment for the infection.
Patients are kept in hospital for up to two weeks and treated with intravenous antibiotics, but the 1.5 million trial will see if they can be treated more effectively with oral treatments at home.
Professor Alan Smyth, of the university’s School of Clinical Sciences said: 'We want to see if intravenous antibiotics do work better than traditional oral treatment, because oral treatment is easier to give at home and does not require a hospital admission.'
Mrs Elliott said said they didn't hesitate
in getting the twins involved with the trial as they hope the research
will give parents of children with CF firm evidence of whether IV
antibiotics really do offer the best treatment option.
In April last year, Alexander was struck down by the infection and spent two weeks at the Queen’s Medical Centre.
Mrs Elliott said it was difficult because her children fell ill at different times.
'You have to juggle being at home with one and in hospital with the other,' she said.
For more information on cystic fibrosis visit www.cftrust.org.uk