I was 29 weeks pregnant when my unborn baby was found to be critically ill with an often-fatal illness called hydrops fetalis. Fluid was building up around his lungs, stunting their growth, and there was fluid under his scalp, and too much amniotic fluid surrounding him – which put him at risk of premature birth.
We were sent from our local hospital to a leading foetal medicine unit, where a specialist did a life-saving but risky procedure on our son in utero – inserting a ‘shunt’ halfway into his chest wall, to try to drain away the fluid surrounding his lungs.
Then, at 32 weeks exactly, I went into premature labour. Our son Joel was born within four hours of my waters breaking, and taken immediately to neonatal intensive care. He would not come home from hospital until the age of five months.
The medical care my son received was extraordinary, but of course those five months were the hardest of my husband’s and my lives. Dealing with Joel’s breathing problems, major stomach surgery and near heart failure, and my shock at his diagnosis with a genetic condition, Noonan syndrome, left me with postnatal depression and anxiety.
But Joel did come home eventually, and although there were many challenges – like being tube-fed until the age of two, multiple operations including open heart surgery, and not walking till he was two-and-a-half – he got better. As I write this, he is eight; a beautiful, bright, creative boy who is completely obsessed with dogs and wolves and has built a world called ‘scaryland’ in his bedroom.
My son is one of a new generation of children whose lives could not have been saved one or two generations ago, and who are starting their lives with unprecedented medical intervention.
As a journalist by profession, I wanted to find out how modern medicine brought us here – and investigate the experiences of other families, and doctors, nurses and scientists, too.
So I wrote a book, The First Breath – a cross between medical memoir and popular science. It explores, among other things, the history of antenatal testing and perinatal genetics, the unique mental health challenges faced by mothers of sick babies, and the longer term impact on children who start their lives with months in hospital. I report on the empowerment of mothers in Swedish neonatal units where parents and babies can stay comfortably together even in intensive care, a solution to the unnatural separation that is still standard in neonatal care in the UK.
My book is a feminist book. Modern science is affecting women’s lives in profound ways, and the female experience of medicine deserves attention. And yet, as I write in The First Breath, ‘For branches of medicine which treat the most intimate zones of the female body, foetal medicine, obstetrics and gynaecology have an oddly male, paternalistic history.’
Obstetrics has traditionally been male-dominated, and history celebrates a number of ‘founding fathers’ of foetal and neonatal medicine, but not so many ‘mothers’. Some foetal and obstetric doctors still behave in ‘macho’, patriarchal ways, patients report. One mother whose story I tell in the book said of her experiences: ‘I felt like a battery-farmed pregnant cow.’
I write in my book that when a baby is critically ill, the mother may be physically healthy, but psychologically, she herself is a high-risk case too and needs looking after. ‘Many mothers have, at times, felt oddly ‘missing’ – insignificant – in relation to their sick babies, both before and after their birth…The mother is reduced to the vessel holding the all-important baby, no longer a person with feelings and thoughts that matter or might be different to the norm – just like all the other ‘mums’ on the conveyor belt.’
Foetal and neonatal units are increasingly aware of mothers’ experiences – in the UK we recently celebrated the first ever Neonatal Mental Health Awareness Week, and practices like Family Integrated Care and NIDCAP reduce the painful separation between mother and baby and make families’ experiences in the NICU better all round. But we still have a long way to go.
Ten feminist strategies when you have a high-risk birth and a sick baby
by Olivia Gordon
- Express milk only if you feel able to; being ‘a good mother’ does not depend on this.
- See your baby whenever you want – it’s not a question of being ‘allowed’; this is your child.
- Assert your need for breaks away from the ward, rest and sleep without shame or guilt.
- Trust your instincts – if a procedure feels painful or you think your baby needs something, voice it. A mother knows her body and baby, and being in hospital doesn’t change that.
- If you don’t feel comfortable with any of the medical staff caring for you or your baby, raise it with the matron in charge.
- Your mental health is vital – your doctor can prescribe certain antidepressants if you need them, even while you’re expressing for a baby in neonatal care.
- If you don’t agree with the way you’re described in the medical notes, or you want medical staff to call you by your name, not just ‘mum’, don’t be afraid to say so.
- Fathers and wider families are important too – don’t feel everything rests on your shoulders alone as the mother.
- Remember that you matter, as well as your baby.
- Keep reminding yourself it’s OK to find this unbelievably difficult. You’re doing an amazing job and you’re the centre of your baby’s world, even if you don’t feel you’re doing much.
The First Breath: How Modern Medicine Saves the Most Fragile Lives by Olivia Gordon is published by Pan Macmillan (£16.99).
© Olivia Gordon
Photo: Nina Hollington