The birth of my first son, Jack, was two days of pain, anxiety and joy. And then, for six months he fed a lot and slept very little. Those days with my newborn were dull and delightful, exhausting and fulfilling; the kind of days where it all feels new and yet you are aware that a million women have been there before you.
So when I became pregnant with my second child I had a sense of what "normal" felt like. It was a quicker birth than with Jack, and then he was in my arms – another boy, Griffin, as hungry as his brother had been. We took him home and for three, warm September weeks things were normal.
Then I got a call. A midwife wanted more blood to repeat Griffin's standard heel-prick test. The original test had been such a formality that I realised I didn't know what it had even been for. Cystic fibrosis, said the voice on the other end of the phone. Griffin's IRT result was inconclusive. We need to do another test as soon as possible.
I googled. The page results for "cystic fibrosis" scrolled and scrolled. Most common genetic illness in the UK. Life-shortening. Mucus clogging the digestive system and lungs. Inhaled antibiotics. Life expectancy of—
During the wait for results my husband and I tried to live life as normal. But it didn't work. We took our toddler to the swings and carried Griffin close in a sling. We drank tea and had hushed conversations that swung from "look at him, there's nothing wrong with him" to "promise me you'll stop looking at the internet?"
Ten long days later a diagnosis of cystic fibrosis was gently confirmed by the specialists at the Royal London Hospital. It turns out that for Griffin "normal" had been a lie all along; from the moment he was conceived he had lived with two faulty copies of the CFTR gene, given to him by his parents, and that he had a life expectancy of… I felt sick every time I heard the number, read the number.
We left the hospital carrying pots of pancreatic enzymes so that Griffin would be able to digest fat properly. These enzymes would now be a part of his life, every day, along with physio to clear his lungs and prophylactic antibiotics. They would be his normal. In turn, our own normal was shattered.
We'd moved into a new house just before Griffin was born, hoping to renovate it gradually. But for the parents of a newly-diagnosed CF baby it was suddenly like living in a nightmare. Damp and mould in the basement posed a threat to his lungs. After studiously cleaning everything with anti-bacterial spray one night, my husband found bio-filmed mould in the washing machine. He said it was like hiding all the knives from the children only to find you'd left a loaded revolver on the kitchen table.
Normal in everyone else's lives became something I found very hard. I fell silent during conversations about second children; about how easy it is the second time round, how the cold you thought was pneumonia in your first is nothing but a sniffle with the second.
A few months after diagnosis, I saw a mum contentedly feeding her baby in the park and I cried so much I found it hard to stop. That baby didn't need enzyme granules tipped over apple purée before he could breastfeed. I cried for Griffin, I cried for my family and I cried because once upon a time I had been that mum.
Now I was a different mum. Now I had a hard number to live with; Griffin’s life expectancy. 37. The age I was when I gave birth to him. A half-life. Not remotely normal. I thought I would grieve forever.
But then as Griffin turned nine months old, something happened that helped me turn a corner. We had been called to a regular development review at our local GP surgery. My husband thought we shouldn't bother, reasoning that our child was already expertly assessed by paediatric doctors on a monthly basis. But I wanted Griffin to do a normal baby thing, so I took him anyway.
Usually when a CF patient visits the surgery they are taken into a room of their own to avoid the risk of contracting infection, but this clinic was packed with babies. I can't put him in this room, I said. It's a development review, they replied: the point is to see how your son interacts with other babies. I looked around. None of them looked snotty. Griffin was straining in my arms. He had recently learnt to crawl.
I put him down and he moved like lightning, shuffling between all the babies, touching each one gently. He placed his outstretched palms on other mothers' knees and smiled at people until they smiled back. He's normal, they said.
And in that moment I realised that, beyond giving medications and managing my own anxieties, it was my job to help my son continue to feel normal; to help him remain open and happy as he explored the universe.
Hannah and her husband co wrote a for the cystic fibrosis trust based on their experience of newborn diagnosis. As part of CF week, the trust have just launched a pack for parents of newly diagnosed babies, you can find it here.
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Guest post: "My baby has cystic fibrosis, and it's my job to help him feel normal"
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MumsnetGuestPosts · 10/06/2015 16:11
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Tellmewhattodooooo ·
13/06/2015 22:52
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