Health journalist Olivia Gordon’s life was turned upside down when she was told that her son would need fetal surgery to survive a rare condition known as hydrops fetalis.
In The First Breath, she investigates the pioneering fetal and neonatal medicine that has saved a generation of babies who wouldn’t have survived even a few decades ago. Not only an investigation into the history of neonatal medicine – from the invention of the incubator to the fast-growing field of perinatal genetics – The First Breath also explores the female experience of medicine through Olivia’s story and those of other mothers who experienced high-risk births.
Here, she discusses this amazing field of medicine and the advances that are still to come, as well as her personal experience of dealing with her son’s genetic diagnosis.
What are some of the most incredible fetal surgeries being carried out today?
People are often staggered by the idea of open fetal surgery, in which the mother’s abdomen and then womb are cut open, the fetus is exposed, the fetus is operated on, and then it’s closed back into the womb, and the pregnancy (hopefully) continues. These controversial procedures were developed in America during the 1980s and '90s. Over time, open fetal surgery has been accepted by doctors around the world as an intervention for spina bifida, and the NHS started rolling out its first such operations in 2018. In The First Breath I describe what it’s like to observe one of these surgeries in the operating theatre – the surgeons make it look weirdly easy, but the skill and responsibility involved are mind-blowing. Another incredible operation is fetal cardiac surgery, which is performed in the US on unborn babies of 26-28 weeks’ gestation when the heart is the size of a peanut.
What will come next in fetal medicine?
The future of fetal medicine will be minimally invasive, and we are seeing with some of the first steps scientists are taking with gene therapy, stem cell transplants and genetic editing that today’s young children will have a very different experience from ours when they, in turn, become parents.
We’ve come a long way – mothers in the 1970s were fortunate even to get an ultrasound scan!
Yes – fetal medicine is a very new field of medicine, which emerged largely thanks to the invention of ultrasound, starting in the 1950s. Before reliable ultrasound, some doctors did attempt to reach babies in utero but they were literally stabbing needles in the dark. My son would have had no chance of survival if he had been born when I was, in 1978. Thanks to fetal medicine – and advances in neonatal care in the 1980s and ‘90s, like surfactant and steroids – he is one of a new generation of survivors. Uncovering this fascinating, brand-new history of these blossoming fields of medicine was one of the parts of writing The First Breath I enjoyed most.
What surprises people about neonatal medicine?
Today, babies born as early as 22 weeks’ gestation can survive, but the focus now is not just on survival but on improving long term outcomes. Doctors now understand that starting a person’s life with months in hospital can affect their neurological development, sometimes profoundly. One important way to minimize the impact of this painful and stressful start in life is to be purposefully low-tech – for instance, allowing the mother more access to her baby and avoiding bright lights and loud noises in the NICU. There’s also growing recognition these days that parents of babies in hospital often suffer greatly emotionally, and need dedicated psychological support. All this is a major focus of my book.
Olivia Gordon, photo credit Nina Hollington
What aspect of having a sick baby affected your family’s life the most?
Apart from the inevitable long-term impact on our whole family of my son starting his life with five months in hospital and having major stomach and heart operations during his first few years, his genetic diagnosis changed everything. My son was diagnosed soon after birth with a genetic condition which was only identified in terms of DNA in the early 21st century - making him one of the first decade of children to receive this particular genetic diagnosis. This situation isn’t unique to my son’s syndrome - a host of other quite obscure genetic conditions have a similar recent history, which means more and more children are growing up with a genetic diagnosis only possible in the last decade or two. In The First Breath I have written about what a shock it was to find out my baby had a genetic condition while he was in the neonatal unit, and how I adjusted and came to embrace it. I’ve also written about how no one really knows much as yet about these genetic ‘mutations’ and what they mean - this is a field dominated still by the unknown - which is an odd situation for families like ours.
Did you build relationships with the doctors who saved your son’s life?
In The First Breath I explore the unique and strange bond between parent and doctor when a baby’s life is saved. In some ways it’s a bridge that can never be crossed, because doctors have to maintain a certain reserve, but as I write in the book, ‘Sometimes, though, a bridge of understanding emerges between the doctor and the patient – when the mother goes back to the doctor with her now-healthy child and says: “Look - this is what you did. This is the person you helped create.” And the doctor looks into that child’s eyes.’
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