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How difficult is it to carry out life-saving surgery on tiny patients with ‘veins as thin as spider webs’? The First Breath focuses on astounding advances in fetal/prenatal surgery, particularly complex surgeries carried out in utero well before a baby is born.
Gordon is a British journalist and the mother of a disabled child who spent his first five months in hospital. She carried out thorough research while writing The First Breath. She interviewed leading pediatricians, surgeons, neonatologists and other doctors, as well as midwives, nurses and allied health professionals. She received permission to observe consultations and surgeries. She also traveled outside the United Kingdom to learn about similar procedures carried out in countries such as Sweden.
Gordon challenges readers to consider the ethical issues involved in decisions about termination, the health and rights of the fetus, and the role and purpose of genetic testing. She urges consideration of how terminology influences our attitude and perspective: ‘What we still call ‘abnormalities’ or ‘anomalies’ in the fetus are what we speak of more sensitively after birth as ‘disabilities’ and ‘diversity’.’
Gordon draws on her own and others’ stories when describing the feelings of inadequacy parents can experience. She’s upfront about the book’s focus on mothers, although acknowledges that fathers’ experiences are ‘just as important’. There are in fact many references to fathers throughout the book, including acknowledgement of the help and information provided by her own father, himself a doctor.
Although considerable resources are directed at unwell infants and children, Gordon suggests that the support needs of their parents are not always recognized or acknowledged. She presents a convincing case for more attention to be focused on parents’ mental health and wellbeing. She says that it is not uncommon for the parents of infants with unexpected medical issues, or a diagnosis before or after birth, to feel considerable stress. They may go on to live with antenatal or postnatal depression, OCD, anxiety, panic disorder or post-traumatic stress disorder.
‘Mothers of healthy babies can work out their own mothering in the privacy of their own home. In the neonatal unit, you’re learning and making mistakes in public.’
Gordon writes frankly about the challenges she and her partner faced during their son’s preparation for, and recovery from, surgery and other interventions. They had to learn the nursing skills required to care for him, such as how to tube-feed and to administer multiple medications. Their life, she says, was never really ‘normal’.
Many parents whose babies have spent time in neonatal units return for visits because ‘it’s a form of catharsis’, says Gordon. Writing this book also appears to have been a form of catharsis for Gordon. I found The First Breath’s mix of first-person and objective, scientific content jarring in some chapters. I wondered whether Gordon had considered writing two books – one a memoir focused on her difficult pregnancy, son’s birth and subsequent unexpected diagnosis with Noonan syndrome; the other focused specifically on the medical and surgical interventions that can save young lives.
Gordon was originally a features writer for British magazines. This perhaps explains her tendency to use melodramatic language to describe some of the situations she observed while carrying out research for her book. Some sections of The First Breath were originally published in mainstream media such as The Daily Mail, The Huffington Post and Red magazine. Maybe Gordon believes that readers of these publications have an appetite for sensationalism. Some of what she heard and saw she calls ‘terrible’ and ‘barbaric’. Parents are ‘aghast’, and ‘terrified and shaking’; pregnancies go ‘haywire’. Her son, en route to an operation, is ‘like a lamb to the slaughter’.
I found her over-zealous use of adjectives to describe children and adults (particularly medical professionals) irritating. Some people sound like characters from a Milly-Molly-Mandy story: ‘the sweetly bustling young district nurse’ and the ‘sensible, friendly-looking midwife with straight brown hair and glasses’. The ‘cool blonde businesslike Australian’ surgeon Kate and the ‘glamorous and charming Colombian neonatal consultant’ are descriptions better-suited to a Danielle Steele novel. Her seeming obsession with people’s appearance (particularly their looks and weight) is especially unfair when directed at children: Gordon compares her son’s ‘stick-like’ legs with the ‘bonny little thighs’ of a baby girl. I wonder how the Director and Clinical Lead for Fetal Medicine services in a leading London hospital feels about Gordon’s description of him as ‘a slim, smiley man [who Gordon] imagined playing carefree games of tennis or yachting in his spare time’, a ‘mysterious heroic figure’, and ‘an upbeat force of nature’. For one doctor, Gordon confesses, she had ‘admiration bordering on a crush’.
The back cover says that The First Breath ‘tells of fear, bravery and love’. This is an accurate summary of the central themes of the book. Fear, bravery and love are shown not only by parents but also by the medical professionals who demonstrate strength, skill and compassion while also sharing their fears and vulnerabilities. Gordon describes the tension for doctors, many of whom are also parents, between becoming emotionally involved and remaining professionally detached.
Before reading this book I had very little knowledge of how modern-day medicine and surgery can save vulnerable infants. I’m in awe of what is possible. The First Breath is centred on healthcare available in the United Kingdom, so it’s not clear to me how many of the surgeries and other techniques described are currently carried out in New Zealand. Gordon provides a list of sources (websites, journal articles, books and so on) that can provide further information about the topics addressed.
I’m not sure whether parents facing the prospect of in utero or neonatal surgery would find Gordon’s book helpful, or instead overwhelming. Only a parent who has lived through a similar experience could make this call. The somewhat voyeuristic tone of Gordon’s writing will not appeal to everyone. And not all stories had a positive outcome.
The First Breath may be a good resource for students of medicine, nursing, social work or similar professions, and health practitioners who are supporting families who face the situations that Gordon describes. It may also be a book that organisations such as Rare Disorders New Zealand , Skylight or IHC could consider stocking in the libraries they maintain for parents and professionals.
Reviewed by Anne Kerslake Hendricks
The First Breath
by Olivia Gordon
Published by Macmillan