The First Breath
Author: Olivia Gordon
This profoundly engaging and illuminating memoir is written from the perspective of a mother who endured the agonising experience of giving birth to a premature baby. Describing this as ‘a story of living through medical history’, the book depicts the author’s first hand experience of the ‘cutting-edge medicine’ that would correct her baby’s multiple congenital anomalies and save his life. The book is an exploration of the innovations and interventions that have transformed perinatal care which the author portrayed as a high stakes and complex field. Whilst she primarily set out to discover how fetomaternal medicine was saving ‘a generation of children who would not have survived before’, she also explored the psychological upheavals and harrowing travails that characterised her experience of the neonatal unit, regretting the lack of ‘human touch‘ and the neglect of the emotional and physical health of families going through what is a traumatic time. The book is therefore also a call to action with recommendations such as those aimed at enhancing ‘the power of a mother’s connection with her baby’ (pages ix-xi, 26-27 and 223-239).
The backdrop to the book’s narrative is the author’s second pregnancy and the agonising events that overshadowed it. With gripping prose, she recounted how her ordeal began in the 29th week of pregnancy when she experienced ‘an odd stitch-like sensation‘ in her abdomen, and how this culminated in a diagnosis and treatment of hydrops fetalis – the consequence of her baby’s impaired lymphatic drainage system. She also portrayed the alarm and apprehension of such incidents as learning that her premature baby was ‘born blue‘, the result of his poorly developed lungs. With several other organs underdeveloped or malfunctioning, the author’s baby had to undergo countless anxiety-provoking interventions which formed a major theme of the book. Some of the daunting operations he underwent included Nissen’s fundoplication to treat reflux; abdominal surgery for necrotising enterocolitis – ‘the fear of all who work in neonatal wards’; and open heart surgery at the age of four to repair an atrial septum which was ‘punched with multiple holes’. The author also recounted the day-to-day procedures her baby endured which, at one point, left him with ‘so many catheters in his veins that the doctors couldn’t stick lines into his arms, legs, hands or feet anymore’. So harrowing was the trauma to her child that she frequently left the ward to avoid witnessing the procedures because ‘it would be almost unbearable to watch him suffer‘, and also because she was apprehensive that he would ‘associated me, his mother, with this torture‘ (pages 4-13, 91-92, 138-143, 235-245 and 283).
A revealing feature of the book is the author’s portrayal of the emotional impact of her experience of the neonatal unit. In a thoroughly heartrending exploration of the psychological burden carried by ‘neonatal mothers‘, she described how depression and post traumatic stress disorder often manifest as a result of such factors as ‘the unnatural separation of a mother and her baby’, the lack of privacy, the guilt and shame of making mistakes and feeling judged in public, the loss of personal identity, and the loss of opportunities to assert motherhood. The author also reviewed the long-lasting impact of the early experience of neonatal units on babies, arguing that it is ‘as traumatic as the experience of a baby who is neglected or abused‘. She supports this assertion with research findings which show that ‘the harsh neonatal unit experience can affect some children’s neurological development, potentially causing difficulties with sensory processing, behaviour and learning as they grow up’. She graphically reflected this when she said ‘a baby who is separated physically from its mother at birth and raised for months in a plastic box, tortured in effect by endless medical procedures, can be expected to become overwhelmed by sensations and emotions, to struggle to feel secure‘. She therefore deplored the fact that healthcare is yet to come to terms with the ‘long-term developmental impact of spending one’s earliest months…undergoing intensive medical interventions’ (pages 209-223, 296, and 287-288).
As compelling as the author’s discussion of the medical complications of premature babies, is her depiction of the congenital disorders that often accompany them. A prominent example she most sensitively explored was Noonan syndrome, the genetic disorder that was behind her son’s plight. She provided an enlightening historical perspective to this disorder when she noted that it was first described by paediatric cardiologist Jacqueline Noonan who had observed several children presenting with the same heart disorders – pulmonary stenosis, hypertrophic cardiomyopathy, and septal defects – along with other features such as widely-spaced eyes, curly hair, and undescended testes. In a narrative worthy of an academic paper, the author painted a graphic portrait of the disorder, for example explaining that it is caused by any of more than ninety mutations in the PTPN11 gene on chromosome 12, and detailing how this results in the over-activation of the critical SHP-2 protein. The author also outlined the current understanding of Noonan’s syndrome as a rasopathy which disrupts the RAS/MAPK metabolic pathway, and she described its frequent association with other developmental diseases such as neurofibromatosis type 1 and Costello syndrome. Other congenital disorders the book discussed included Down’s, Patau’s, Edward’s, Turner’s, and Klinefelter’s syndromes (pages 157-161 and 170-197).
Beyond narrating her personal experience of a complicated pregnancy, the author, a journalist, also recounted the historical landmarks of fetomaternal medicine in which she recognised the leading pioneers of the field. In this regard, she noted the contributions of John Hobbins who introduced the fetoscope – through which ‘the doctor could gaze directly into the womb’; Ian Donald who introduced foetal ultrasound scanning when he drew ‘the parallel between the submarine in water and the fetus in its watery sac’; and Kypros Nicolaides who introduced the nuchal translucency test to diagnose Down’s syndrome. In the care of preterm babies, she highlighted the innovations of obstetrician Étienne Stéphane Tarnier who pioneered ‘the first modern incubator’ which he adapted from the ‘incubators of eggs of exotic birds’ in Paris zoo; anesthesiologist Virginia Apgar who introduced the APGAR score for grading ‘how healthy a newborn is within their first moments’; paediatrician Mary Ellen Avery who observed that the lungs of premature babies did not expand because their airs sacs lacked surfactant; and surgeon Stanley Dudrick who pioneered the technique of total parenteral nutrition when he ‘hit on the idea of infusing a solution of concentrated nutrients directly into the superior vena cava’. Other landmark breakthroughs the book explored are the introduction of alpha-fetoprotein screening for neural tube defects, and the use of prostaglandin injections to keep the ductus arteriosus open to channel oxygenated blood into the aorta in babies with congenital heart diseases (pages 65-85, 99-121, 188-190 and 256).
Central to the book’s narrative is its exploration of the breath-taking and groundbreaking advances that have propelled fetomaternal surgery to the forefront of foetal care. The author carefully charted the history of this nascent specialty, depicting such early breakthroughs as the first prenatal treatment for polyhydramnios in the 1880’s, and the first fetal blood transfusion in 1963. The author particularly highlighted the contributions of Michael Harrison, the acknowledged father of fetal surgery, whose innovations included the treatment of foetal urinary tract obstruction and hydrops. The author’s depiction of fetomaternal surgical procedures was quite detailed, such as when she described ex utero intrapartum treatment (EXIT), a procedure that is used to correct congenital diaphragmatic hernia and higher airway obstruction, and which is carried out at term via a Cesarean section – with the foetus still attached to the placenta! Other similarly fascinating fetomaternal interventions the author described included fetoscopic laser treatment to prevent twin-to-twin transfusion syndrome; in-utero bone marrow stem cell transplantation for severe combined immunodeficiency and sickle cell anaemia; and the ‘even bolder and more alien’ foetal surgery to correct spina bifida, an operation that is carried out before the 26th week of pregnancy to prevent the baby’s urine from damaging its spinal cord and brain (pages 61-63, 33-37, 40-55, 1 and 330-331)
This excellently researched and informative book is not only an exhilarating journey in to the rapidly evolving world of fetomaternal medicine, it is a deeply human perspective of carrying a complicated pregnancy in the modern era. It is a graphic and palpable portrayal of the hopes and fears that accompany the experiences of the neonatal baby unit, and it is set against the cutting edge breakthroughs in obstetric care. The author very seamlessly weaved the personal and the academic, avoiding the journalistic hyperbole that frequently mars such narratives. The book is a masterclass in the cutting edge technologies that are transforming the care of pregnancy and delivery, and an enlightening perspective of the emotional roller coaster of perinatal units.
This book details the arduous journey of babies and their parents through a complicated pregnancy and early post-natal period. Just as it paints the full picture of the unimaginable technological breakthroughs that have made previously impossible feats routine, the book also highlights the need to address the profound pain and distress these advances inflict on newborns and their mothers. The author’s well considered and insightful perspectives finely balance the history and the future prospects of fetomaternal medicine. The book is a treasure trove of information and helpful insights about a critical healthcare specialty, and I highly recommend it to all doctors.
Publisher, Place, Year: Bluebird, London, 2019
Number of chapters: 10
Number of pages: 353
Star rating: 5