Last Christmas, I joked about the fact that my son Leo didn't have cystic fibrosis the Christmas before. Of course he did, but we didn't know that. He was diagnosed in March 2001; 18 months on, Leo is a normal, stroppy toddler.
Apart from the relentless routine of physiotherapy and digestive enzymes and antibiotics, Leo is the same as any other two-year-old - his halo has slipped right down to his knees and he is craving control. This does present us with some problems: he is supposed to have physiotherapy at least twice a day; we currently manage it about once every other day. He is supposed to have an inhaler twice a day (sometimes four times if he has a cough), this is usually once a day.
We have tried everything: bribery, making it fun, getting his older brother to pretend to have it too. The hardest part is trying to catch him in between playing in the sandpit, chasing his brother, and water painting: "Leo, would you like to stop having all that fun and come and do some physio and keep still for 15 minutes?" - "Noooooo!" We've been advised not to give him lots of negative attention by being too confrontational about it, but when he has a bad cough we do sometimes gently hold him down. Despite this sporadic treatment regime, he is doing well - above-average weight and height - but I get very stressed when he refuses treatment. A long-term reduction in physiotherapy could result in chest infections, which could lead to lung damage.
Now that Leo is hurtling himself into the world around him we have to place certain restrictions on him. He is not allowed to mix with anyone else with CF. We were told this from day one, but the implications didn't sink in for a while, and the more I think about it the more it horrifies me. People with CF can cross-infect each other with serious chest infections, so I reluctantly understand why.
When I take Leo to the CF clinic for his check up, patients are "streamlined" to try and avoid too much contact and I often get a little whisper in my ear while I'm waiting: "Would you mind waiting in there?" As we are ushered out I find myself sneakily looking round trying to guess which other child has CF. This can result in embarrassing meetings in the WRVS canteen after appointments when either myself or the other parent mouths, "Don't worry, I'll go". It feels as though we should have a secret handshake, or perhaps a secret cough.
The enormity of this hit me recently when I was reading about the Cystic Fibrosis Trust Biennial Conference, October 2002, and came across the advice: "In view of the risk of cross-infection, we recommend that people with CF do not attend this conference." I would not want Leo to be cross-infected, but if I was a CF sufferer I would also feel angry that no one will be there to represent CF sufferers. The trust are doing the best they can by developing video-links and websites. Years ago parents used to get CF kids together for parties, not realising that this may have contributed to a shorter life expectancy (which is now 30-40). It seems sad that Leo and his CF-diagnosed mate will not be able to go down the pub together and offer each other support.
Stale water is another major problem, as is wet sand and jacuzzis. This is all to do with an infection called Pseudomonas Aeruginosa . It is the most frequent cause of chronic infection for CF sufferers and can reduce life expectancy. It thrives in stagnant or warm, wet conditions. We have to clean out the sandpit regularly and let the sand dry out. We also have to watch out for these hazards when we go out. When I go to someone's house for a mother and toddler coffee morning, I immediately scan the garden with my parental alarm system which raises my pulse if I spot a plantpot full of green murky water. I can almost see the "thing" in there waiting to get him.
I have to ask the host how old the sand is in the sandpit, but most people are very understanding, if somewhat baffled. The obvious question is: "What about the beach?" Some doctors say children with CF should not go to the beach, but most feel it is a question of striking a balance between the risk of infection and quality of life. ("Mum, I'm 45 but I've never seen a beach." Imagine.)
Yet another hazard is horse stables. For CF sufferers the slogan is, "Ride the horse but leave the mucking out to someone else" - which sounds like a good deal. The air in horse stables is often contaminated with spores of aspergillus fumigatus ; I did Latin at school but I still call it "the asparagus bug". Inhalation of these spores can cause an allergic reaction in the lungs of CF sufferers. So while Leo's older brother runs up and down the stable block at Grandma's house, we have to distract Leo with things like: "Look at the pretty flowers in the field, Leo." Sadly, pets are not a good idea generally, and Leo loves animals. A horse approaches us, Leo's older brother clings on to daddy, Leo tries to stick his fingers up the horse's nostrils and giggles. We had the cat re-homed at Christmas. Leo's breathing improved considerably a few weeks after the cat's departure.
As for our family unit, we seem to have come out of the dark tunnel of the "coming to terms" bit. The tunnel was pretty scary - parenthood seems even harder when feeling childlike and insecure, but we have been cared for too. With the help of family, Relate, friends, boxes of chocolates and hospital staff with awesome dedication, we seem to have it in perspective. Apart from the other day, when I read about a four-year old girl with CF having a heart and lung transplant - aaaaagh!
Leo's older brother, aged three, has suffered a certain amount of "sibling of child with serious illness syndrome", as explained to us by a paediatric psychologist. This has resulted in more jealousy than usual; although Leo hates all his treatments, to his older brother it's just Leo getting more attention than him. Leo is doing so well that we sometimes forget about his CF, but we feel quite strongly that we can not afford to be complacent about this. For one thing, a cure will only be found if enough millions are raised for the CF Trust to carry on with the research, and we don't want Leo to die around 40. "Forty" seems to be etched on my brain these days. That is the life expectancy estimated for Leo - given to us on the day he was diagnosed.
Although it is only a guide, and it depends how Leo's health pans out, my heightened emotional state at the time has soldered it permanently onto my psyche. This has changed my perspective on life and I know it sounds tacky, but I do appreciate life more. So, I'm on a mission: raise money for the CF Trust, protect Leo from the "stale water monster", and maybe write a book, called Fifty Ways to Make Physiotherapy Attractive to a Toddler.
· See www.cftrust.org.uk
