We gave our son a life sentence before he took his first breath
When it came to Bailey’s cystic fibrosis, mother’s intuition failed entirely, writes Laura Barrett
Ayear ago, I sat in an ambulance holding my newborn son, with tears streaming down my face. As we were blue-lit across London, with every bump I felt a tug at the wound from my C-section four days earlier. Our son, Bailey, was admitted to Great Ormond Street Hospital with a blocked bowel and distended tummy, and needed emergency surgery at just seven days old. Post op, he was left with a stoma, where part of the bowel sits on the outside. But sometimes when you think you’ve reached the bottom, there’s still further to fall.
Bailey continued to lose weight, and was placed on a drip; the doctors took bloods for a genetics test. They had mentioned cystic fibrosis when we arrived, but I instinctively dismissed the possibility given there was no family history, and our two older sons – Harry, 7, and Mylo, 4 – were healthy.
The next day, we were told it was what they had suspected. The thing mother’s intuition told me it wasn’t.
Cystic fibrosis. Those words make me go cold. This life-limiting genetic condition affects the movement of salt and water in and out of cells, causing a build-up of thick sticky mucus in the lungs, digestive system and organs. Life expectancies are getting longer: currently, half of people with CF live past the age of 40. There is no cure.
Bailey stayed in hospital for six more weeks. With one son in hospital and two at home, I was torn in two. I slept in a camp bed in Bailey’s room and sat by his side every day, expressing milk every three hours for more than two months, praying he would one day breastfeed again. Days comprised of cannulas being fitted, veins collapsing, blood transfusions, tests, tubes, surgical reviews and CF discussions.
Doctors were able to reverse the stoma. Eventually we left hospital and could finally do all the things we had longed for. But I knew we would have to return to hospital for regular checks. The nightmare didn’t end, it just altered.
My guilt for creating Bailey with this condition is like nothing I can describe. Everyone tells you not to blame
yourself, but you do. We gave him a life sentence before he took his first breath.
One in 24 people carry the faulty CF gene. That means when I met Kev at university 18 years ago, out of 23 other people in the line-up, we chose each other. A couple who both carry the recessive gene have a one in four chance of having a child with CF.
They say a cystic fibrosis diagnosis is a form of grief, and I agree. The lost
‘My guilt for creating Bailey with his condition is like nothing I can describe’
dreams, sadness, desperation to go back in time, guilt, the denial. I longed for a call telling us it was a mistake.
I remember kissing Bailey, and for the first time tasting his saltier skin, which I had been warned about. People with CF lose a lot of salt, and despite all the results, that kiss made it real. Our son had CF. I had to accept that.
But speak to anyone who knows about CF, and you will be met with optimism and hope – for extended life expectancy, and new treatments that will change everything. There are different severities of CF, and only time will tell what awaits Bailey. But a few things are certain: the need for daily physiotherapy and medicines, Creon enzymes every time he eats, daily antibiotics, nebuliser treatments, frequent infections and a vital need for exercise. Bailey being the son of Kev, a former professional rugby player and now strength and conditioning coach at Saracens, seems a blessing.
Since his diagnosis, some of our family have been tested and learnt they are also carriers. My only comfort is that the next generation – my sons and their future children – will have an awareness we did not. The law requires Harry and Mylo to wait until they are 16 to find out if they are carriers.
Celebrating Bailey’s first birthday this month, it’s hard to believe how far he has come – from that frail newborn to a chubby, happy little boy hitting all his milestones.
I often wonder how different life would be if CF hadn’t come crashing into our lives. But then I glance across the kitchen to see Bailey crawling and smiling, and I know life is more wonderful with him in our world.
This week is Cystic Fibrosis Awareness Week 2019, and Wear Yellow Day is June 21. Visit cysticfibrosis.org.uk