baby

'At 6 months, our son was diagnosed with cystic fibrosis. He was never expected to live past school.'

Cody was a smiling, happy baby when we brought him home from the hospital to our home. 

Bridget’s cat, Gurdy, who’d previously enjoyed full run of the domain, instantly adopted Cody as her own. 

She would occupy the foot of Cody’s crib, which amazed me, as Cody’s turds truly ponged, the vapours seemingly able to penetrate leaden walls – an aroma that should have sent up red flags, or rung alarm bells.

Poos from un-enzymed CF kids are horrifically ripe. They pong. 

We worried Gurdy-cat might accidentally smother Cody, so we made alterations to his crib to safely accommodate her. 

I was already on the way to becoming a neurotic father, and we planted the crib at our bedside. No need for the high-tech baby monitor. 

Our family. Image: Supplied. 

Before Cody was born the cat always took up her place at the foot of our bed on Bridget’s side and I would sometimes kick it in my sleep.

Something’s just not right.

Bridget knew instinctively that something was just not right about our son.

She ignored well-intentioned advice about letting Cody cry at night and religiously fed our baby whenever he called out. 

Bridget extracted breast milk by way of a battery-powered gizmo she attached to her boobs, and when she was too tired to do a 2, 4 and 6am feeding, I happily fed Cody his bottle from our bed as Gurdy kept vigil, watching me like a schoolmarm, making sure I got the procedure correct.

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Our conspiracy to feed Cody was covert, as the experts kept suggesting that giving in to feeding requests at all hours was setting the stage for a spoiled child. 

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Bridget’s instincts have always been good, and I was happy to go along. I have no stomach for the sound of any child crying. 

Our baby doctor repeatedly reminded Bridget to just relax; this was, after all, our first child. And ‘doctor knows best’.  

Bridget insisted that there was something more sinister going on inside of our son, and with dogged determination kept returning to doctors’ waiting rooms.

When I could, I’d go along to heist a dog-eared copy of the Reader’s Digest. 

I’ve been stealing them from doctors’ and dentists’ reception rooms since the seventh grade. On the last go-around, the paediatrician said they’d administer a ‘salt test’ for cystic fibrosis, but she was quite sure this was not what was ailing our son. 

Looking back, I think she was also already convinced it was a simple case of parental anxiety around a first baby which inspired our many treks to see doctors. 

The medical community was far too professional and polite to suggest Bridget was being neurotic.

The call that changed it all.

I took the call from the doctor’s receptionist, asking us to please come to the office after visiting hours, and preferably without Cody. 

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When we arrived after five with our son, the receptionist seemed downright displeased. She’d now have to stay after hours and monitor Cody while we spoke to the duo of doctors in their chambers. 

I knew something was up. Bridget reluctantly eased over our six-month-old son to the lass at the front desk. 

The reception area was populated with small, child-sized tables and chairs, and the walls were adorned with smiling turtles and penguins dancing. 

The floor featured open toy boxes containing hundreds of small, attractively coloured plastic pieces that could easily lodge in Cody’s throat. I notice things like this. I’m a natural worry wart.

What the doctors confirmed was that, despite their best guesses and earlier notions, our son had tested positive for cystic fibrosis. They tested twice to be certain. 

The two female practitioners took turns speaking calmly, suggesting that great strides were being made in the treatment of CF. They cautioned us to not go looking for answers in the library archives. The information we’d find there was not only out of date, but dreadfully alarming.

Bridget and I, our arms folded in our laps, sat quietly as the doctors spoke. And I could see the teardrops rolling slowly down the cheek of my wonderful wife. 

I was numb and didn’t fully understand what this diagnosis meant down the track. I think Bridget had an unspoken premonition all along. 

The other thing I recall with great clarity about that day was the weather. It was 37 degrees, with almost the same humidity. 

Our Chevy Nova car had no air conditioning, and I recall being soaked. Looking over at Bridget, I watched a mother hugging her child tightly, all the way home to Henrietta Street. 

Cody slept, nested between us that evening instead of in his bedside crib, and we again had Gurdy-cat at our feet, watching over her child. It was the first time in six months we all slept in the same bedding.

I ignored the doctors’ suggestion of not doing the homework and, instead of going to the office, I pedalled Bridget’s flamingo-pink bike to the library and peered through the windows, waiting for the doors to open. 

What I discovered in the literature was devastating ... my beautiful Bridget and I had given our Cody a genetic death sentence; he was not expected to live long enough to attend primary school. Unknowingly we’d gifted our boy with the dreaded double Delta F508 mutation of cystic fibrosis, the very worst marriage of mutant genes.

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Help put us and cystic fibrosis out of business!

On the day that Cody was born, the average lifespan for a CF kid was six to eight years of age, but breakthroughs in the treatment of cystic fibrosis seemed to be cropping up weekly and I was convinced a cure for our Cody was only days away. With the uncovering of the gene that caused CF, came an entire new wave of activities and medications that could improve our Cody’s odds.

Bridget and I were keen to do something, so with the help of Bridget’s brother Michael in Hong Kong, we imported three, 40-foot containers of furniture and ceramics from the far east, and opened up 7000 feet of retail space along the main street, with the sole purpose of raising funds and awareness for CF. 

We’d never heard of it till Cody was diagnosed with it!

For us, and the baker’s dozen university kids who chipped in, we felt every customer held the potential to help find a cure. 

Some folks spent only a few dollars, while others spent thousands. 

Cody is now in his 30s. Image: Supplied. 

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Even browsers got a flier about CF to take away when they went. I threw money at a heartfelt TV commercial, solicited the support of the mayor’s office, Kiwanis and Rotary clubs, and my buddies at the Hibernian Society passed the bucket around. The newspaper, radio and TV people were all pleasantly in our top pocket.

The night before we opened, we filled galvanised buckets with beer and champagne, and invited the top shelf of South Carolina society to take a sneak peek; black tie, or blue jeans, we took orders on the spot, and promised to deliver the next day. 

That evening, the till closed at $25,000, with some folks just making a ‘small contribution’ to the effort, without taking a single thing home but our appreciation. 

Cody was there, never leaving his perch in Bridget’s arms. He was all smiles, and when his Uncle Jim poked his belly, he laughingly poked back.

At eight o’clock on the morning we opened (at 9!), there was a line of 25 people clamouring on the footpath to save ‘up to 75 per cent off our products’ if they were willing to learn about finding a CF cure. 

Nobody left our shop without a CF flier. 

I’ve never worked harder, or longer hours on my feet in my entire life. We were open six days a week, from early till late, made free deliveries in exchange for a CF contribution and, in the end, moved over $250,000 worth of support selling Asian items. 

Support for CF research and patient services came not only from our customers, but also from wellwishers. We had people ask us repeatedly if we were considering staying in the furniture business full-time and offers to ‘sell the franchise’ as a money-making proposition. 

In the end, we kept to our schedule, sold every single bit of inventory we had, and hung a massive THANK YOU! sign in the window when we left. 

Sharing our dream with our community, we discovered we had heaps and heaps of help. I discovered that Bridget and I were not alone in this campaign to see our son, and others with CF, do well. 

All those generous shoulders to lean into helped me, come out from under the covers.

This was an edited extract from Breathing Through a Straw, Cody & I, by Mark William Sheehan, New Holland Publishers RRP $29.99 available from all good book retailers or online.

Image: Supplied. 

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