with Olivia Gordon
Parents of children with disabilities are known for their generosity in sharing their knowledge to help others. It’s one of the things this community shines at. Sometimes, they even write their experiences into a book.
And that’s just what journalist, Olivia Gordon has done. Olivia has written for The Times, Guardian, Telegraph, Red, Psychologies, The Pool, Broadly and more. She is the mother of a disabled child whose condition was detected while still in the womb. Her new book, The First Breath, is about how modern medicine saves the most fragile lives, The First Breath, is published by Bluebird this week. You can order it from Amazon here
Olivia has written about it today for us and has several copies to give away - use the form at the end of the article.
About The First Breath by Olivia Gordon
The operation which saved my son’s life was performed while he was still in utero.
When I was 29 weeks pregnant, a scan found the baby had a serious condition called hydrops fetalis. His body’s lymphatic system was not working, and fluid was accumulating around his lungs, stunting their growth.
I was referred to a foetal medicine unit, where a doctor inserted a ‘shunt’ through my belly and uterus and halfway into Joel’s chest in an attempt to drain this fluid. It’s a difficult and rare procedure, and the problem wasn’t so easily fixed. My darling son Joel was born prematurely at 32 weeks exactly one winter morning in 2011, and didn’t come out of hospital until summer.
Over his first five months in neonatal care, my little boy with his serious, quizzical stare went through so much: chronic lung disease of prematurity, a heart emergency, major stomach surgery, the diagnosis of a genetic condition no-one has ever heard of, called Noonan syndrome…My husband Phil and I were overjoyed to have our first child alive, but he was not at all well.
When Joel finally came home, we began our family life with a baby with ‘complex needs’. Joel was gastrostomy-fed until he was two, didn’t walk until two-and-a-half, and had had open heart surgery and two more stomach operations by his fifth birthday.
As a small, fragile toddler, he was extremely sensitive and didn’t take to many of the things his peers did. His pushchair going over bumpy ground in the park made him wail, he refused to hold a crayon, and at playgroups he pushed the colourful parachute away, crying. When he started school, unable to sit still and listen, he struggled immediately.
At the same time, he was the most innocent yet wise, curious, loving soul imaginable. The sort of person who never, ever holds a grudge or sulks: I only have to say the word ‘sausages’ (his favourite food) and he lights up. And when he loved something, it was his world. At first he was fascinated by cars and trains, but over the years this morphed from Santa getting stuck in the chimney to snakes and other scary animals.
Joel was ‘different’ - likely a result of a combination of Noonan syndrome, prematurity and infancy in hospital - and as a family we gradually learned about autism, ADHD, dyspraxia and sensory processing disorder.
Today Joel is eight, and has made incredible progress. He’s an imaginative artist and budding naturalist who spends hours discussing which is more deadly, the inland taipan or the hook-nosed sea snake. Still, he’s sent into a panic by the sound of people clapping or a hand dryer, he’s small for his age, and if he’s not interested in something, he’s really not interested. In his own words, he ‘finds things difficult’. (Don’t we all?)
The idea for my book, The First Breath, grew out of this experience.
My experience shaped my journalistic focus
As a journalist, I started writing features about foetal and neonatal care and genetic screening for newspapers like the Times, Telegraph and Guardian, as well as writing a column about being a ‘SEND mother’ for a parenting website.
I always felt the subject of foetal and neonatal medicine deserved a book, though. My son is one of a new generation of children who start their lives with unprecedented levels of medical intervention, who could not have been saved before medical advances at the end of the 20th century. A generation beginning life with genetic diagnoses that have only existed for a few years, and which even geneticists don’t really understand.
My book – a mixture of medical memoir and popular science - tells the story of the start of Joel’s life and explores how, exactly, modern medicine saved him. One important element of this is how children like Joel find life as they leave infancy behind – recent research has found, for example, that some children born preterm struggle with attention, working memory, co-ordination and anxiety.
I also wanted to raise awareness of the specific experiences and emotions of parents of sick and disabled babies, and wrote about my own postnatal anxiety and depression in the NICU.
What helped us in the neonatal unit
The things which may help both the baby and the mother’s wellbeing are not high-tech, I discovered - but about reducing the artificial separation of the typical NICU and allowing families to be together, as naturally as possible. Letting parents sleep comfortably in a bed next to their babies when they want to, for example. This is routine in hospitals I visited in Sweden, and we are now just beginning to see this practice in the NHS, in one or two neonatal units.
As a journalist, I wanted to understand the context of I experienced as a mother of a sick baby. One of the parts of writing The First Breath I enjoyed most was bringing to light the extraordinary history of foetal and neonatal medicine, and paediatric surgery. We have seen medical history made in our lifetimes – just think about ultrasound scanning alone; what mothers today have, compared to what their mothers had in the 70s and 80s. And what’s on the horizon will make current medicine look like the dark ages.
I returned to the foetal and neonatal units where Joel was treated (and other leading units around the world) and observed ward life, surgeries and procedures, to try to learn about it from the doctors’ and nurses’ point of view. Their work can mean as much to them as it does to parents, I discovered, even if they can’t show it. And I heard from other families about their experiences: of extreme prematurity, heart defects, rare foetal anomalies, cerebral palsy, spina bifida, Down’s syndrome…of loss or survival, and of life after hospital.
Above all, in writing The First Breath I wanted to pay tribute to the work of the doctors and nurses who bring sick babies to life and health, and to my son, and those children like him, who endure more in their first months and years than most of us do in our lifetimes.
There can be a sentimental view of disabled children in which they are ‘brave little warriors’, but I always felt alienated from this and Joel, I think, does, too. ‘I don’t want to be a superhero’, he told me not long ago, on the way to yet another hospital appointment. The truth is, he doesn’t feel like fighting, and he doesn’t feel brave – and neither do I. But I have a son who is the sweetest boy in the world, who I adore, and who adores me back. That is all I ever dreamed of.
By Olivia Gordon, author of The First Breath: How Modern Medicine Saves The Most Fragile Lives, published by Bluebird, June 13th 2019
*Amazon links contain an affiliate code from which SNJ receives a very small commission. Read our disclosure policy
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Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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