After seven years of trying for a baby, we were overjoyed when Sofia was born.
She had all the usual newborn screening tests, including checks for cystic fibrosis (CF). We were devastated when the test result was high, suggesting a diagnosis would be very likely. As a paediatrician, I was well aware that it was an incurable disease which meant we might outlive our child. We were offered a re-test and when it came back with a much lower result our distress turned to elation.
For a while Sofia seemed relatively fine but she was always hungry and although she ate a lot, she gradually lost weight. Around the age of two, she started to suffer symptoms often seen in CF patients. A sweat test that showed high salt content confirmed our fears. Understanding the outcome of the test meant I broke the horrible news to Kate, my wife: the hardest thing I have done in my life.
When Sofia was two and a half, in April 2010, she was officially diagnosed with CF, and our lives changed forever. Her condition means that her lungs and digestive system become clogged with mucus, affecting breathing and digestion. Chest infections can be very serious for her and require aggressive treatment.
To begin with it was hard to read about CF; I wished I could forget about it and be in blissful ignorance. It was too painful to see the future. I wanted to be a father to my child, not a doctor.
I always wondered: of all the people this could have happened to, why me? But, as someone whose work is caring for children, who is better placed to protect my child? While this is a privilege, it also comes with added responsibility, often adding tension and frustration to my relationships with Sofia and with Kate.
Sofia has a demanding daily routine of medication, physiotherapy and hospital appointments. It affects her in many ways, from what she chooses to eat to how different she feels to her peers.
Having a seriously ill child has changed me as a father and a doctor. I have experienced the pain of receiving the dreaded news I give to some of my patients and their families. This has added a new level of compassion and empathy to the care I strive to offer to my young patients. It has helped me to understand their everyday struggle to adjust to the adversity of life, and their very personal way of coping.
As a parent, I have come to the painful realisation that there are limits to what I can do for my child and how much control I have. I worry that one day she will say “Papa, why can’t you heal me?” and I dread the answer I will not have.
There is something intensely unnatural in a parent’s acceptance that their own child may die before them. Sofia is so precious to us, as is the time we have with her. We strive to embrace that time, fighting Sofia’s corner and making the years ahead memorable and priceless. I know that without doctors, nurses, therapists and organisations such as the Rainbow Trust Children’s Charity, this could have not been possible.
We owe a great deal of gratitude to Pam, our family support worker, in helping us with practical support while I am at work: her understanding and empathy for our struggle makes the reality of Sofia’s illness more bearable.
Having a child with CF has changed me and my outlook on life. It’s made me appreciate life so much more and to give to other events the proportionate perspective they deserve. In contrast, it has helped me not to be distracted from the magic of life’s “ordinary” moments. Those moments when your heart takes a photo are the moments I cherish. When Sofia climbs on my lap for a cuddle, I stop and enjoy every second I have with her.
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