Pierwszy oddech. Jak współczesna medycyna ratuje najbardziej kruche życie

by Olivia Gordon

Jak kruche, a jednocześnie wytrwałe może być ludzkie życie?
Jakie problemy stają przed dzieckiem i jego rodziną, gdy miesiącami oglądają się jedynie przez ścianę inkubatora, a każde krótkie wzięcie na ręce jest odnotowane i wyliczone? Czy powinniśmy bliżej przyjrzeć się życiu płodowemu, jeśli kilkuletni chłopiec pamięta i szuka swojego brata bliźniaka, który umarł jeszcze przed porodem? W jaki sposób wykonuje się skomplikowane operacje na maleńkich sercach, zabiegi na otwartej macicy i w łonie matki? Czy jesteśmy gotowi na pokolenie dzieci, które kilka dekad temu jeszcze nie istniało?
Oto fascynująca opowieść o pionierskich dziedzinach medycyny: perinatologii i neonatologii. Dzięki nim na świecie pojawiło się nowe bezprecedensowe pokolenie- dzieci uratowanych jeszcze w łonie matki lub po przedwczesnym porodzie. Olivia Gordon dzieli się własnymi przeżyciami oraz przytacza historie ciąż obarczonych wysokim ryzykiem, które stały się udziałem wielu kobiet. Ze szczegółami opisuje więź łączącą rodziców z lekarzami, w których rękach spoczywa życie matki i dziecka.

Pierwszy oddech to książka o strachu, odwadze i miłości, która rodzi się w ekstremalnych warunkach. Inspiracją autorki była własna historia dramatycznej walki o życie swojego nienarodzonego syna.

Genres: Nonfiction, Medicine, Medical, Science, Audiobook, Memoir

432 pages, Paperback

Published February 24, 2021

Reviews

[Dr. Appu Sasidharan (Dasfill) · Rating 5 out of 5]

This book is a personal memoir written by the journalist Olivia Gordon. The author did thorough research on congenital disabilities and their management after she delivered a premature baby diagnosed with Noonan syndrome. She gives a detailed account of all the advanced techniques used in the management of Noonan syndrome and various other disorders. She also provides a comprehensive overview of the experiences of mothers who had children with various other disabilities. It will be a challenging book to read if you are a mother. The pains that mothers and children had to go through due to genetic abnormalities and congenital disabilities will be felt like an onerous one to read initially. But the grit and compassion shown by these mothers will restore your faith in humanity. It will show you how divine is mother's love to their children and how mothers love helps their children overcome all the troubles caused by various medical conditions to live a happy life.

What you can learn from this book
1) One of the biggest fears of mothers all over the world
The author mentions a disorder called Spina Bifida and says that it is a disorder that mothers all over the world are afraid of. It is one of the toughest conditions that a mother will have to face. I can understand all the problems mothers of spina bifida children face mentioned in this book, both from a doctor's and a patient's perspective. My sister was born with this condition. I could not even see her face as she died before I was born. My mother is a strong lady and is also a Doctor who knows everything about this disorder. But even after so many years, I have still seen her eyes filling up with tears when she hears anything about spina bifida or sees a patient with this condition. I can feel how much pain a mother goes through when she sees her children suffering from congenital and genetic disabilities. The author was successful in transferring those emotions without any filters to her readers through her compassionate writing in this book.

"The baby came back to view in the monitor I was watching, a wall of pink flesh. This tiny unborn person about the size of the mug of coffee has been diagnosed with a condition many parents around the world fear, and some terminate for. Spina bifida is less common now as the pregnant woman takes folic acid which helps to prevent it. But it still happens. ”

2) Noonan syndrome
Gordon portrays all the feelings that went through her mind when her Doctor mentioned all the terminologies and symptoms associated with her child's condition, Noonan syndrome. Noonan syndrome is a genetic disorder that affects the normal development in the various parts of the body.

"Dr. Harding generally took me through the medical terminology page by page, line by line. Noonan syndrome features included
Facial dysmorphia including ptosis (drooping eyelids),
Hypertelorism (wide-spaced eyes),
Low set ears,
Prominent forehead,
Webbed neck,
Eyesight and hearing problems,
Chance of congenital heart disease,
Abnormal growth,
Short stature,
Feeding problems,
Unusually shaped chest
Scoliosis,
Kidney abnormalities,
Bleeding disorders,
Lymphatic disorders (which explains the hydrous,
Undescended testicles,
Developmental delay and a good chance of learning disabilities.”

3) How Doctors should deal with the parents of a patient with Down syndrome
Down syndrome is one of the most important causes of intellectual disability in children. It is caused by extra genetic material in chromosome 21 (21 trisomy). In this book, the author tells what a senior doctor told her about dealing with parents of children with Down syndrome.

"Modern Doctors who treat children with disabilities like Down syndrome have to try to be inoffensive right down to the language they use. For example, where do you draw the line in calling someone normal? In science and medicine, we do say normal and abnormal. It is actually not terribly helpful, and we got to be very careful not to in any sense be derogatory."

My favourite three lines from this book

“3.01mm is a number I will never forget. It was the exact width of the black space of the back of our baby's neck in the nuchal translucency scan, and the fact that it was over 3 mm, I was told it could be a sign that the fetus had Down syndrome or another chromosomal condition ."

“The people who do intensive care work have all kinds of characters. But the one thing that unites them is the attention to the detail.”

“Nothing makes a woman out of a girl faster than coping with congenital defects in a child.”

What could have been better?
This book was written by a journalist and not a Medical professional. I expected to see at least a few factual errors, which generally happen when a non-medical person writes a book dealing with medical conditions (which is understandable as it is too difficult to deal with the Medical Jargon for even an experienced Doctor). But I was not able to pick up a single mistake in this book. The author did extensive research before she wrote this book. In my opinion, this book is just perfect.

Rating
5/5 This is a must-read book for all the parents.

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[Louise Wilson · Rating 4 out of 5]

This is an informative book about how fragile human life can be and how the medicines we can get today, help us cope with problems that pregnancy and childbirth can bring. The parts of the book on medical history fascinated me. Also the decisions medical providers have to make on how to save lives on a daily basis.

This is a thought provoking, emotional, insight into the challenges our Doctors, nurses etc take care to care for our future generations. This is a beautifully written memoir which tells us the authors experience with feral surgery and neonatal care.

I would like to thank NetGalley, Pan Macmillan and the author Olivia Gordon for my ARC in exchange for an honest review.

[Julia · Rating 5 out of 5]

The First Breath by Olivia Gordon is a powerful book exploring the area of fetal medicine and care for the babies in the neo natal unit. As well as examining various disabilities and the procedures and care involved. It is a heart wrenching book. The bravery of the parents is astounding. The skills of the medical professionals immense. The fight in the babies enormous.
Olivia Gordon had a premature son, Joel in 2011. He has had his fair share of health problems to overcome. It is Joel who prompted Olivia Gordon to look into and explore the world of fetal medicine.
The whole book is fascinating. The medical advances in my lifetime are huge. I take my hat off to the health professionals with their skills and knowledge.
The book includes not only Olivia Gordon’s experiences but also the personal stories of others. At the end of the book, we catch up with the children to learn how they are now doing.
What really comes across is the resilience of the parents. They fight for their babies every step of the way as they face huge challenges even before birth.
Society has thankfully moved on from the 1950’s where people with disabilities were hidden from the world in institutions. I worked for many years as a learning support assistant for special needs in the local high school. These children are amazing – they are brave as they face challenges daily, they are strong and they are uncomplaining, doing even the hardest tasks with a smile.
We must never forget that the children with disabilities are still children. They want to laugh and play and learn.
The First Breath was such a powerful read. I want to leave you with this thought:
“He’s not a list of characteristics in a textbook, he’s my child.”
I received this book for free. A favourable review was not required and all views expressed are my own.

[Mahnoor Asif · Rating 5 out of 5]

Olivia Gordon, a journalist penned down about the field of medicine, fetal medicine.


An informative book in which she wrote about her experience of being a mother of a child with hydrops and tales of mothers having children with complicated disorders.
Ms. Gordon explains how she was happy with her smooth going pregnancy but then suddenly she got to know that her child has hydrops ( excessive amniotic fluid interfering with proper development of baby) and after agreeing to prenatal surgery to delivering a preterm baby who remains in hospital for 5 months fixed with tubes, cannulas and masks all over. How hard for a mother to see her child from a rectangular box aka incubator fixed with needles and having constant vital measures. HEARTBREAKING!
She shares how fetal medicine is turning the tables all over. High sensitivity prenatal diagnosis and prenatal surgeries are treating the untreatable. I love the way she shares the history of procedures from blind needle inserting to X-rays then ultrasounds.
I adore the doctors in the fetal medicine unit, such a risk-taking field. One needs to be so brave and skillful to have hands-on in this field.
She discusses the post-trauma impacts on the mind and development of a kid and also on parents.
In end, she shares about the projects, geneticists, and doctors are working on ranging from inserting healthy genes to prevent gene disorders to bone marrow implantation into, anyhow everything they are doing is to extend and improve the quality of life.

[Jo Manton · Rating 5 out of 5]

This book really is an inspiration.
I have so much respect for all the specialists doctors and nurses in this profession it truly is mind blowing they do such an amazing service to all that may need their help.
Mind blowing book.

[Lucia · Rating 5 out of 5]

Read and reviewed in exchange for a free copy from NetGalley. I went into this expecting a memoir from a neonatal doctor, in the vein of Max Pemberton or Adam Kay, the sort of book I love, although was more hesitant with this given the nature of neonatology. However, the book was about the experience of Gordon (and others) parenting with a child in NICU and their subsequent lives, interspersed with the history of foetal medicine and neonatology. The book was fascinating (I'm generally very interested in healthcare and the history of medicine), and Gordon writes fantastically, her words filled with emotion. While this wasn't always an easy read, it is incredibly worthwhile, and I'd definitely recommend it to others.

[Becs · Rating 3 out of 5]

Journalist Olivia Gordon began to delve into the world of prenatal and neonatal medicine when she discovered first hand that pregnancy and the expected and long anticipated healthy baby isn't always the reality. In fact, Olivia had a really difficult and challenging time as an expectant mum after she was told that her baby boy was struggling and needed some life-changing and relatively new interventions whilst she was still pregnant.

This account is less so about Olivia and her journey with her son, and more about taking some time to gain some perspective whilst she shares her own story, other interesting cases she's witnessed during her investigations for writing this book and explores some of the thoughts of the leading minds of fetal medicine. She sheds some light on the enormous developments even in very recent times with specialist fetal medicine interventions and asks us to consider just how far we have come. Consider this - only within your own lifespan have some of these new changes been made, meaning that if you had been that baby with a condition capable of taking your life in utero, you wouldn't be here right now. In present day those changes mean that most babies with most conditions compatible with life can receive care and procedures which might very well save them.

What I really liked was that this book is ostensibly a very big thank you, a celebration no less, to the fetal maternal specialists, sonographers, midwives and neonatal nurses who actually make all of this happen. They get very little credit for what is an astonishingly difficult career choice and the reality is that a lot of those professionals have chosen this pathway entirely selflessly - they just want to save babies lives - so credit to Olivia Gordon for her nod to them. The ethical dilemmas they face - is their patient the mother, fetus or actually both? - are also slightly touched upon and this made for interesting debate.

Olivia Gordon does a really good job of making quite complex conditions, critical situations and often confusing procedures relatively simple to understand to an outsider. I can see a real comfort for readers who are going through similar situations, have children themselves or simply want to learn a little more about what is essentially a very forward thinking and ever-evolving speciality. Equally, it could help those professionals in the field to really feel more appreciated.

Reading the content though for someone familiar with this field perhaps has less to be gained in terms of new information. The major drawbacks for me were pacing and a few small errors. Obviously the author is not claiming to be a specialist in this field, she purely wants to share her story and others to offer some insight and she does this wonderfully and for the most part very accurately. There are a couple of areas which are less well explained or slightly incorrect. For example, a section surrounding spina bifida signs and the shape of the fetal head was slightly incorrect ("a fetus with spina bifida has a distinctive head shape a little like a banana" - it is the cerebellum which is banana shaped in cases of spina bifida, not the fetal head; the fetal head is however lemon shaped in some spina bifida cases). This wouldn't be jarring at all for someone reading for the experience, but for those more familiar with this area it might be a small niggle.

As is necessary with a first hand account, a lot of facts have been scattered throughout this book. This is great, but makes for quite a dry read. Not necessarily a bad thing, and absolutely could have been a personal issue given that the subject matter was not new to me, but something to bear in mind.

Overall I think the author has done a really great job of enabling more people to really appreciate the realities of some pregnancies and for some babies; the emotional strain a difficult or unknown diagnosis or series of tests places on an already anxious expectant mum are staggering. She somehow manages to cover a lot of ground, genuinely capturing the history of fetal medicine and the developments therein, in relatively few pages and touches on a number of interesting cases. Ultimately, the take home message for me was this: Every pregnancy is different but the people who can do something to care for your baby ABSOLUTELY will do everything they know how to in order to make sure your baby reaches you safely.

ARC provided free from Netgalley in exchange for an honest review.

[Alison Bradbury · Rating 5 out of 5]

This is an emotional delve into fetal medicine and what happens in neonatal units across both the UK and the world. This is not an easy read if you have had any dealings with NICU units or have had difficult pregnancies. It's very scientific but also very human as both the doctors, nurses, patients and parents are the focus of this book. It poses questions about how babies are cared for and how both the child's and parents aftercare is dealt with and I'm sure it will help people who have been through NICU situations or are going through them now feel that they are not alone.

[Julie Haigh · Rating 5 out of 5]

Fascinating, eloquent, moving and emotional.

This was a wonderful book about little miracles, stressful times, and tragic losses too. Some parts of the book were originally published as articles in eg. The Guardian, The Times, etc. An excellent book-not a particularly quick or easy read-it's quite in-depth, but my kind of book-I love medical memoirs. This has a sort of documentary style approach, which I liked.

The author is allowed to observe operations and procedures and writes about them in here. As well as interviewing others, she also has her own experiences to call on. Problems were detected with her own child before birth, and he spent many months in the care of NICU (Neonatal Intensive Care Unit). Six years after her son's life was saved at birth, the author went back to the neonatal unit to research and interview for this book. She's had a sick baby, and a premature baby-so she knows what she's talking about, she's experienced it; been through many of the things the parents she interviews have. So honest, intelligent, highly detailed-but not just clinical-as this lady has gone through this as well as the people she interviews, her experiences and emotions are there too.

There are some terrible conditions. Conditions and procedures I'd not heard of before are detailed here. The history of this miraculous surgery, and its pioneers. All very well-researched.

An amazing book, it was incredibly interesting to me. Of course there are very hard times too. But amazing what can be done nowadays, I didn't know the half of it. For me, a totally fascinating book.

[Kim · Rating 5 out of 5]

Olivia Gordon was 29 weeks pregnant with her first child when a scan revealed that something wasn’t quite right. As a consequence, she had to have a procedure performed in the womb to save her child, delaying his birth for another few weeks. The events that followed – a premature delivery, more life-saving operations, months in neonatal care – led Gordon to an interest in the new and revolutionary field of fetal medicine. This book is the result.

The First Breath is partly an account of how fetal medicine, including the ability to operate on the foetus in utero, has made it possible to save the lives of babies who, at any other point in human history would have died. Gordon talks to some of the pioneers in the field, including Kypros Nicolaides and Stuart Campbell, and watches life-saving operations being performed. All this is fascinating, and jaw-dropping, and the medical details are explained in simple, clear language that is accessible even to those of us without a medical background.

But this story of medical discovery is interwoven with Gordon’s own, deeply moving story of her own experience as a new mother with a child in neonatal care. This story – of not being able to cuddle one’s own baby, of seeing it suffer as needles and tubes are thrust into it, of having to leave the baby every night in the hands of strangers – will resonate with many women. The book is very good indeed on the devastating emotional impact of being separated from one’s child, and the shock of an unexpected diagnosis. Gordon is full of admiration for the nurses and doctors who dedicate their lives to caring for babies who hover on the brink of death – and yet is also able to show us how mothers can feel sidelined as mere incubators. As well as telling her own story, Gordon interviews other women whose babies were born premature or sick, and writes eloquently about the reality of life for parents who have to cope with a child’s long-term disabilities.

Never sentimental, the book nonetheless manages to pack a powerful emotional punch. As well as bringing to life the largely untold story of fetal medicine, Gordon is able to convey, with compassion and warmth, how it feels to be a mother caught up in the exhausting, harrowing trauma of caring for a very sick baby.

[Nick Davies · Rating 4 out of 5]

I have a lot of respect and admiration for Olivia Gordon for writing this informative, honest and insightful book about neonatal medicine and her (and her son's) personal journey through premature birth, numerous health problems requiring surgery, and the years subsequent to him finally leaving hospital. It's a very thought-provoking and involving story, and the author also talks candidly about the medical, scientific and psychological aspects of her child's condition and many other aspects of neonatal medicine in general. The surgical descriptions were especially fascinating.

Well researched and enlightening, my only criticisms would be that - for all my accepting that she is perfectly entitled to her views (and that they are based on a great deal more experience than mine!) - at times this came over slightly egocentric. Understandable of course, and frank, but after a first half of the book which spoke more broadly about the field, the second half was more anecdotal where I would've preferred a little more science. I even began to question her criticisms of how some people were less sensitive than they could have been, it's a fine balance between efficiency and sensitivity and of course a mother's focus on her and her child's feelings are going to feel like they trump everything else in her eyes.

Nevertheless, this was a fascinating read and an incredible insight into the traumatic journey of being a parent to a fragile child.

[Joanna Pearl · Rating 4 out of 5]

Olivia Gordon’s son Joel was born with a genetic syndrome in 2011. This is the story of his life interwoven with the history of fetal medicine and the stories of the other babies and parents Gordon met on her journey.
It is also the story of a new generation of babies born very early, and how we will need to respond to them and their abilities and define them by their humanity rather than their diagnoses.
A journalist, she interviews some of the medics who treated Joel and is also witness to surgery that would have been unthinkable just a few years ago.
This adds up to a book that is highly personal and emotional but is also an objective history of the progress in keeping very premature babies alive.
It is not always an easy read, as you might expect, but it is an interesting one and Gordon handles the juxtaposition of personal and historical well.
It is very dense though and I sometimes found I could only read it in small chunks.
Recommended.

[Charlotte · Rating 5 out of 5]

Really brilliant book, it's amazing and devastating, uplifting and also very gritty and terribly sad in places. It's simply stunning what can be achieved through medicine and equally the book presents many disturbing and thought provoking ethical dilemmas. So refreshing to read a book that is talking so openly about pregnancy and the many challenges that women and their families face when having a baby. We are so often in today's culture sold the idea that pregnancy and having a baby is some kind of yogic retreat of perfection, when, in reality it can be as frightening and isolating as it is miraculous and wonderful.

[Laura · Rating 4 out of 5]

From its cover I had assumed this to be written by a nurse or doctor or at the very least by someone with first hand professional experience of caring for sick babies. However, this is indeed by a journalist and parent to a baby who was a patient in the neonatal intensive care unit. The book is a combination of the authors own personal experiences and observations of being a patients parent, with a dash of neonatal history thrown in for good measure. The author thoroughly explores how the NICU works and how it’s staff operate. Some years after her son was discharged, the author returned as a media observer and began to see things through a whole different lense.

This was a thoughtfully written book, partially repetitive but not enough to stop me reading. The history of neonatology was probably one of the highlights for me; as well as learning how medicine has adapted to provide care for the most premature and sick of babies.

A worthwhile read for budding medical professionals.

[Annette · Rating 4 out of 5]

A well written emotional account of how modern medicine has improved over the years in the field of neonatal care. I would imagine this book would be of great interest to people working in these areas.

[Erika · Rating 4 out of 5]

Författaren är journalist och har själv upplevt ett föräldraskap med dramatisk start – hennes son är ett av de barn som överlevde tack vare ett ingrepp före födseln och vård på neonatalavdelning efter födseln. Hon skriver öppet om att hon några år senare började arbeta med boken för att förstå vad som hände och hur läkarvetenskapen fått de här insikterna – och hon gör det bra. Det är fascinerande att få veta mer om hur metoderna utvecklats. Även om de fall som beskrivs i boken är både ovanliga och allvarliga får också information om mera allmänna vårdmetoder av nyfödda och prematurer plats. Till exempel lärde jag mig hur man utvecklat vården av nyföddhetsgulsot, något som många kommer i kontakt med.
Jag uppskattar också att Gordon skriver mångfacetterat om de här sakerna och problematiserar både diagnosticeringen av kromosomavvikelser och vår syn på funktionsvariationer.
Jag lyssnade på ljudboksversionen där uppläsaren valde att läsa citat från skottar och utlänningar med accent respektive brytning, en versionering som kändes absurd med tanke på att hon inte gett sig tid att ta reda på hur hon ska uttala svenska ortsnamn när författaren berättar om sitt besök på Karolinska institutet och i Huddinge.

[Olivia · Rating 5 out of 5]

This powerful book strikes a careful and fascinating balance between the emotional viewpoint of motherhood and clearly explained facts of what’s actually happening in hospitals today. I was gripped from the outset.
Before I read this book, I thought I was fairly well-versed in what was involved in this arena. I know people who had preemies. I knew that there was something called the “skaboo” - aka the SCBU - special care baby unit. Beyond that I didn’t really have a clue. I realise now I had no idea how they got through that time and this book has made me wish I was able to help them more during that time.
Many who’d been through such a traumatic experience may wish to put it all behind them and move on as best they can but this memoir is frank and vivid and heart-wrenching and heart-warming all at the same time.
In this book, Olivia Gordon captures precisely a world where life is “on hold” in an extraordinary place full of devoted parents holding it together alongside dedicated NHS workers doing utterly amazing things, quietly every day.
I can’t recommend it enough.

[Nic · Rating 3 out of 5]

⭐️⭐️⭐️ 3 (just) stars

This book started well, as we learned about the author’s pregnancy journey. However it kind of abruptly jumped ahead to the outcome and then we got lots of chapters about the history of foetal medicine/surgery.

Then interspersed with flashbacks to the author’s story again.

I found it jumped around too much and there was way too much historical detail and data.

But I did really enjoy her personal experiences, those of the other parents she met and her time with the doctors, who lets face it are miracle workers.

[Tamsin · Rating 5 out of 5]

The First Breath is part very moving memoir and part investigation into the extraordinary fetal and neonatal advances in the last century, from sonography to heart surgery, and what lies ahead for this new generation of special care babies. I rarely read non-fiction but I'm glad I made an exception for this fascinating book.

[Amanda McKechan · Rating 4 out of 5]

Really informative and interesting.. Emotional at times and brought back lots of neonatal memories.

[Gabriela Jas · Rating 5 out of 5]

WSPANIAŁA! Przedstawia temat z medyczno-technicznej perspektywy, a jednocześnie jest pełna emocji.
5 gwiazdek to za mało

[Ania · Rating 5 out of 5]

4,5/5

[Jodie (That Happy Reader) · Rating 5 out of 5]

The First Breath is a beautifully written memoir about the author’s experience with fetal surgery and neonatal care as she lived it as the parent of Joel born in 2011. The book explores the historical, current and futuristic look at the care of babies while in utero and in the months following birth. It takes an honest look into the implications of saving babies born with severe prematurity or profound congenital issues and the impact, not only on the child, but the parent and rest of the family. Through a series of interviews with specialists in this field, the book provides insight into the differences in philosophy of care between individual caregivers, and certainly within different cultures. The book also provides a narrative of the experiences of several other parents whose children have spent their first months in hospital.

I highly enjoyed this book. It is insightful, deeply moving and thought-provoking. It challenges our health care systems to take a good look at how we can improve care of these tiny individuals as well as the family supporting them. I respected the author’s concerns regarding the lack of support for these children as they age out of many government-sponsored funding. This is an important discussion which needs to be explored further as medical technology saves and extends the life of babies who in earlier decades would simply have died.

[zara · Rating 3 out of 5]

I was so fascinated by this book. As a teen, it is somewhat strange for me to be so interested in pregnancy, but for some reason, I am. And when I saw this available to request on Netgalley, I requested it straight away.

Now, I feel incredibly educated about neonatal medicine and it was so interesting to read about. I loved reading about the experiences of different mothers, and I loved learning about Joel as well.

My only problem was the format and structure of the book. It was quite difficult to read in that a lot of it was one big information dump. The chapters were long, and the experiences of the mothers were spread between the chapters. I’d end up forgetting about one infant after a few chapters, but then their stories would be revisited again.

Apart from that, I’m so glad I now have more knowledge on the subject of neonatal medicine. I feel quite enlightened.

Thank you Netgalley for a free copy of this book.

[Elite Group · Rating 4 out of 5]

A fascinating account of modern foetal medicine by a mother who has experienced its impact first-hand

When Olivia Gordon and her husband found out she was pregnant with their first baby, they were unbelievably excited to become parents. Never in their darkest dreams did they imagine that there might be a problem with their unborn child. But at 29 weeks gestation, a scan revealed that something was wrong – their baby had polyhydramnios (excess amniotic fluid) and would require a risky in utero operation to stand a chance of surviving. Even after he was born, Joel had ongoing problems, some of which were related to a genetic abnormality, and spent many months in a neonatal intensive care unit. Through her own story and those of other mothers with sick or premature babies, Olivia provides a fascinating popular science account of the world of foetal medicine and the incredible advances that have allowed a generation of babies to be born healthy and thrive.

This was an incredibly brave and well-researched book, which gives a detailed but understandable explanation of many of the recent developments in foetal medicine. From the very first ultrasound scans, to the use of pre-natal diagnostic techniques for chromosomal abnormalities, to cutting edge surgery that is performed on a foetus before re-inserting it back into its mother’s womb to await a natural birth, Olivia touches on a myriad of topics in a way that is descriptive and thorough and yet simple enough to be understood by non-medical readers. I felt a lot of respect for her for returning to the places of her son’s darkest hours in order to research this book, and the guts and bravery it must have taken to revisit these memories. Interspersed with the facts she presents is the story of her own son’s journey from a sick foetus to a healthy and vibrant child, as well as stories from fellow mothers, some of which don’t have such a happy ending. These true-life accounts pack quite an emotional punch, and I felt a lot for the parents of these children with severe diseases and disabilities. The author also touches on the contentious ethical issues surrounding this area, including termination of pregnancies with genetic abnormalities and the medical advances that have led to very premature infants surviving but with very severe disabilities.

Unfortunately, there were a couple of aspects of this book that I didn’t enjoy. Not all of the information was new to me and there were a few instances where I felt the author had over-simplified an explanation or made slight errors in her descriptions. One thing I really disliked was her comments about how staff members writing ‘patient’, ‘mum’ or ‘baby’ in the notes of neonatal unit patients rather than their specific names could contribute to antenatal and postnatal depression - this really irritated me, as it is done for a very valid patient safety and confidentiality reason, and also seemed a slightly cheap and ignorant comment to make about a very serious mental health issue. Additionally, whilst the author had nothing but praise for the foetal medicine consultants and described the neonatal nurses in a similarly uniformly positive manner, the junior medical staff barely got a mention and when they did, it was to describe them as being ‘anxious’, ‘confused’ or incompetent. I have a close friend who spent four months working as a junior doctor in a neonatal unit, during which time she cared for hundreds of very sick babies and performed CPR on multiple infants. Understandably, she found the experience deeply stressful, traumatising and incredibly difficult practically and emotionally. For all the mention or praise staff at her level get in this book, she might as well have been twiddling her thumbs in a corner.

Despite these minor and relatively personal niggles, this was an intriguing and yet understandable book that would be a stimulating read for anyone with an interest in medicine or the world of obstetrics. Whilst the facts did become a little dry at times and the pace of the writing occasionally became slightly stilted, it was still readable and enjoyable.

Daenerys

Breakaway Reviewers received a copy of this book to review.

[Joy Lenton · Rating 5 out of 5]

Few things hit us with such poignancy and pathos than to see a tiny scrap of humanity being kept alive by technology. With all the tubes, wires and bleeping machinery and the skilled, intensive care these premature infants require. So imagine how it might feel to be an anxiously hovering parent, hoping and praying your born-too-soon baby survives and thrives.

This is the unwanted task assigned to Olivia Gordon and her husband as their son is treated fetally, and for prematurity and its attendant problems and needs. The mother in her felt it all. The journalist in her was brave enough to revisit this anguish a few short years later.

Given privileged access to staff, patients and parents on the Intensive Care Unit and Special Care Baby Unit where her son was born and treated, she shares their stories interwoven with her own. It makes for fascinating, heart-rending reading.

Although the medical staff and babies are the major players here, it's important to remember the mothers' needs as well. This quote reveals how vital it is: "In many cases (including my own), although a fetus is critically ill, the mother herself has no physical illness. But psychologically, she does need to be looked after; she herself is a high-risk case too."

And the problems don't cease once a child has been discharged. Home care continues as frightened parents learn how to rely on their own intuition and apply the skilled procedures they have been taught. It's a time where celebrations are muted, as recovery and ongoing care is often fraught with problems.

Before starting school, the author's son, Joel, had to answer a list of questions, one of which was stating what he was good at. She dutifully pens his response "Having operations." These innocently spoken words hold a huge weight of meaning, significance and pain for both of them.

It's a miracle that these little ones are able to be treated and live. Yet their ongoing difficulties can lead to them looking, acting and feeling different from their peers. There's a lot of catching up to do as well as challenges that endure, because "being different is a gift society is only just learning to value."

The families learn to adapt and adjust, as do the children as they grow up. Societal expectations or expressions can cause their own set of difficulties as she cites here: "But why should he have to be a ‘superhero’ or a ‘warrior’ or any of the other clichés with which people talk about children with health problems?"

They, like so many others, lived through the experience because they had to. Because "the only bravery of the fetal and neonatal units is simply getting through each day." In this riveting read, we take a ringside seat, and it's a privilege to have this deeply personal insight of what it is truly like.

[Michelle · Rating 3 out of 5]

The subtitle of my edition of The First Breath is A Memoir of Motherhood and Medicine, which is a good summation of this book. Journalist Olivia Gordon combines her ability as a science communicator with her personal story of her son Joel.

Treating a baby in utero; keeping premature babies alive; diagnosing genetic conditions - these are all part of our world at present, yet relatively new interventions in the medical world. Gordon details her experiences, from the initial scan that detected a problem with her unborn child; to his premature birth; his time - a long time - in Neonatal Intensive Care (NICU), to bringing him home and raising a slightly different child. Along the way, she details how many of the procedures were developed, and the doctors who have provided pioneering science and invention in the new field of neonatology. These doctors have often worked on techniques and research that has not been respected, but became ground breaking, and obviously life changing for the babies they worked on.

Gordon leaves the reader in no doubt of the anxiety, fear and uncertainty that mothers undergoing a problematic pregnancy face, and the confusing world of the NICU. However she writes in a somewhat dry, British way, and the book is not an overwhelmingly emotional read. She details the lives of other children who have been born with genetic disorders and extreme prematurity, and tells the story of the mothers of these children.

The book is well researched, and touches on the ethical issues that this new field raises. Should life be preserved at any cost? How should we view later term abortion when 23 week old babies are kept alive? What choices accompany the diagnosis in utero of a genetic disorder?

18 years ago I gave birth to twins at 28 weeks gestation, one with an extremely low birth weight. I don't think I could have read this book in the first few years of the twins' life. Like many mothers in this book, the time spent in NICU is difficult and traumatic and not easily relived. I ponder, like the author, on what the impact is on my children's development as a result of those early months in an incubator, with tubes and lines and breathing equipment - so different from a womb. Yet the alternative - to NOT have them alive with me now - is unthinkable.

This is a readable book, about science and parenthood. It one that raises many questions and details scenarios that stay in the mind of the reader after the book is finished.

[Ebony · Rating 5 out of 5]

A great book that really highlights the patient’s experience and parent’s perspective when initially faced with the prospect of having a premature child and raising a child with complex health/behavioural needs.

This book was really quite informative as Olivia Gordon takes the reader on the journey that her family embarked on in the lead up to and following the birth of her son, Joel. The medical science was reasonably balanced with anecdotes and historical narrative that worked well to highlight the enormity and excellence of the innovative techniques used in fetal medicine and neonatal surgery.

A lot of medical memoirs and popular science books are very often written by doctors and other healthcare professionals so it was interesting to have the perspective shifted to focus on how a patient (and then the mother of a patient) views and experiences the healthcare system. This insight ranged from comments on the difference styles of care received, personability of healthcare professionals and more. I really appreciated how even though the lens was centred on the patient journey, Gordon also took the time to interview not only the professionals that had a hand in her and Joel’s care and other families that she encountered during time in NICU but also world leaders/pioneers in fetal medicine. This provided a very holistic view of how the patient journey has been shaped over the years by new innovations and changes in understanding.

The last few chapters in the book were enlightening as these really honed in on the author’s experiences in raising Joel, acknowledging that she isn’t able to speak on his behalf, but rather reflected on how the experience of prenatal surgery and neonatal intensive care might have shaped his current everyday experiences and differences. The book weighed up both the challenges and joys whilst emphasising the need for more research and insight into the long term effects of invasive critical interventions that some babies undergo very early on in development, and how these may shape their reality later on in life.

A really profound read - beautiful in its portrayal of the birth and development of the field of fetal medicine, and centred on a family’s journey through it.

[Tiah]

~This is a story of living through medical history, a history so recent it happened within my own generation's lifetime. New fields of medicine built in the last decades of the twentieth century and the dawn of twenty-first have saved a generation of children who would not have survived before, whose first breaths come only thanks to teams of medics and neonatologists. This medicine has also created anew generation of parents who raise these survivor children.~

~'A good consultant is just someone who is good at guessing.' He was right. Non-medical people, especially those of us who have studied and worked in the arts, tend to have a naive idea that medicine is an exact science. But a little exposure to medicine had taught Phil and me that it is quite the opposite: vague.~

~It took a while for modern sophisticated neonatal units with their high-tech equipment and procedures to learn that, ironically, a holistic, humane approach that costs nothing and uses no technology is just as crucial.~

~People are scared of death,' Stephanie said to me. 'They're scared of not doing enough for their child, but actually sometimes doing enough for your child is letting them go and letting them die.~

~My radiant son wasn't a brave little soldier; he was too pure and innocent to know what bravery or war were. The weaker babies who die, I knew, are no less brave than the ones who pull through. Speaking of bravery, doesn't that imply making a choice to face the worst? In that case, sick babies aren't especially brave and neither were Phil and I as parents. We lived through that experience because we had to. There was no other choice. The only bravery of the fetal and neonatal units is simply getting through each day.~

~It's hard not to accept attention and validation. Parents of disabled children are devoted, work hard and have difficult lives - they deserve support. But how easy it is to fall into the personal of the virtuous parent of a disabled child who is a 'little miracles'. And what will it be like for these 'little miracles' when they are middle-aged and not so cute anymore?~

[Hells · Rating 4 out of 5]

'The First Breath' is a fascinating and brave look at the world of the youngest and most ill babies, before and after birth. As the mother of a 640g 28 week baby (now 18 and about to go to a top Uni), it was in turns reassuring and distressing to plunge back into that world. Gordon has shown the gritty and often unpleasant reality of life in Neonatal Intensive Care in a way I could never have found words for, she has a knack for painting harsh pictures with delicacy. It isn't all doom and gloom though, there is hope, happiness and often peace to be found in the darkest corners.

I am not a huge fan of the style, I found the constant switching back and forth from a chatty, casual mumsy style to the dry, academic tone to be highly irritating. It felt like two very different books had been cut up and jammed together, a feeling increased by some rambling and repetitions. However, the information was easy to digest and so interesting that this didn't put me off.

I was particularly impressed by the courage the mothers' showed in admitting their negative feelings and struggles to cope. I think more new mothers would cope better if they felt more able to say how they really felt, rather than what is expected.

Quite a bit of the history of fetal and neonatal medicine can be found in this book, and that was a real joy to read. I loved seeing what ideas and occurrences lead to the innovations we have now, and even to the point of seeing where we are going from here.