In the UK more than half of the people affected by Cystic Fibrosis (CF) will live past the age of 41. As a parent of a child with CF you have various statistics in your mind at various times, but most of the time you try not to think about it. A few months ago I questioned that statistic as we thought that our Minty wasn’t going to make it through her chest infection aged just three. I can write about it now, but that was a shocking moment. 41 years old seemed like an eternity. As doctors my husband and I knew she was seriously ill. Her respiratory rate hit 70, heart rate 180, temperature was 41, she needed oxygen to maintaining her saturation and had not passed urine in 24 hours. She sustained this for hours and I wondered how her little body could keep going having had a general anaesthetic and bilateral lung collapse. We thought she was going to have a respiratory arrest. Those days were bleak and cystic fibrosis had taken over her life. But she recovered. We recovered.
It’s interesting to see how a three year old perceives her condition. She knew she was ill and knew that hospital was where she needed to go. Her choice of clothing that day is reflected in this poignant picture. She had planned this outfit to arrive in hospital. It was her best party dress. She walked into the ward proudly and then sat on the bed. She looked down and tears filled her eyes. I asked her if she was scared. ‘Yes, mummy’, we paused, snuggled and then she jumped down holding back her tears and played with her dollies.This week she completed her first lung function tests, getting 110% of predicted. She’s getting ready to start nursery soon and we’ve written her care plan. I thought I would share our philosophy for living a normal life, with normal activities and hopes and dreams.
‘We believe Minty is a magical little girl! She inspires us daily and is tougher than we imagine. She is independent, funny, caring, sociable, exuberant and extremely adaptable. She does not see herself as ill or suffering. She sees herself as any other little girl, but sometimes she goes into hospital and every day she takes medicines to keep her well. This is her normal life and we make it normal for her. Even when she is really ill and goes into hospital, she goes there to get better and in her last admission she knew she needed to go to get better. CF is a journey that we all learn from all the time but we have developed a philosophy that we hope anyone who looks after her shares. Minty is number four of four children, she has one older brother and two older sisters.
We only use positive language surrounding the condition. She is living with it, she is not suffering, she is not ill. Medicines are not ‘yucky’ or inconvenient. Avoiding certain things are to keep her healthy not ‘stop her from getting sick’. Physiotherapy is to keep her fit and healthy. When she doesn’t want to do it we suggest that she wants to feel great or well. She remembers what it’s like to be unwell and go into hospital, she is able to make the connection and will always pick to do the things that keep her healthy if she needs a bit of encouragement.
When talking to others in her presence about her condition we remain positive in our wording and attitude. This enables her to remain positive in her attitude to treatments, and by her engaging actively that will give her the best chance of a healthy long lifetime.
However, CF is a life shortening condition with a life expectancy in the 40s. With good care, children like Minty are looking forward to much longer life expectancies. It is also important to allow her to feel rubbish, angry and sad. It is important to remember that Minty getting a cold most of the time will be fine, but frequently may result in two weeks of oral antibiotics or sometimes a hospital admission with a general anaesthetic, PICC line insertion and 2 weeks of intravenous antibiotics. She has had 3 admissions so far, we hope to keep them to a minimum by following good CF care. There are many treatments in development, gene therapy, medications and more. As a family we keenly await these for her, we fundraise for CF Trust and keep an eye on research.’
Here is Minty running a toddler race. She may be last but she’s living life to the max.