'Like many NICU parents, I know what it’s like to have my child become seriously ill' - Olivia's story

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Olivia describes the parallels between the COVID-19 outbreak and being in neonatal care, including the wisdom her neonatal experience has given her to get through these challenging times.

When I was writing The First Breath, a book about intensive care, from ventilation and CPAP to the traumatic impact of hospitalisation on patients and families, I never dreamt how intensely these subjects would soon figure in all our lives. How frightening intensive care would become not just for neonatal families, but for all families.

I wrote my book at a safe distance from the peculiar terror of life with a loved one in intensive care. My son left all that behind as an infant. I never imagined that these things would strike fear into me again, and into the whole world.

I've been fortunate when it comes to my own family and friends’ health during the coronavirus pandemic. But this strange, uncertain time has unearthed a lot of emotions from my five months with my son in neonatal care. That feeling returned of having to balance on a seesaw of safety and risk, forced to make swift decisions while still unsure what is 'sensible' and ‘reasonable’. Will my children be all right? Guilt - am I doing the right thing for my children; am I a good enough mother? What authorities should I trust? Can I trust my own instincts? Longing for connection with others who might give me strength and vice versa, but finding myself cut off from family and friends – one is physically separated from one’s child in the NICU, and again in lockdown families and friends have been separated.

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My experience in the neonatal unit has helped me now. I was surprised, in March, to find emotions I had thought I’d never feel again flooding through me. Raw vulnerability; actual fear. Like many NICU parents, I know what it’s like to have my child become seriously ill, nearly die. I learned from that, back in my NICU days, not to be paranoid or sentimental. To be protective but rational. To try to trust myself, even just a little. To save real panic for situations that deserve it. Otherwise, one goes a bit crazy. So, my instinct throughout this time has been not to go overboard with anxiety.

From my NICU days when I spent hours Googling diagnoses and medical issues and scaring myself senseless, I learned not to be swayed by the wildly varying opinions of strangers and acquaintances online – instead, to focus on the expert advice of doctors who actually know my child and my family. I don’t feel I have the luxury, the innocence, to debate online with strangers and distant acquaintances about children’s life and death risks in this pandemic. For me, the emotions about serious illness in my son’s NICU days are still too intense to expose in that way.

One thing keeps striking me - now the general public are thinking about the intensive care experience, the ventilation experience, and they are aware of how traumatic it is. I deeply hope that this will, when things calm down, lead to greater awareness about how the most vulnerable patients of all - premature and sick babies - are affected by their time in intensive care. If you've read The First Breath, you'll know this issue is dear to my heart and a big part of my family's story.

It also feels like the gratitude and admiration for NHS doctors and nurses I experienced during my NICU days (I wanted to kiss the ground they walked on) is something huge numbers of people are now feeling. That's another big theme of The First Breath, and in the book, I explain how scientific breakthroughs and the mind-blowing dedication of doctors and nurses have made lifesaving NHS treatment possible.

Most positive of all, I’ve been able to spend these lockdown months close to my son and daughter, in a way that wasn’t possible when my son was in hospital and we were largely separated. Deep down I know this long, uninterrupted time together - happy times, grumpy days and all - has gone some way to heal that painful parting we endured as a mother and newborn. And for that I am thankful.

Want to read more?

The First Breath documents Olivia's son’s journey through the neonatal unit and delves into the history of neonatal care.
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