Lost in a Medical World I Once Knew

I used to work in neonatal care; I used to think I knew what NICU was like.

I had no idea what NICU was like.

I thought I understood the importance of enabling mums to be mums in neonatal and intensive care.

I had no idea of what it was like to be a mum in neonatal intensive care.

I used to think how amazing it must feel to take your baby home and that when mums walked out of the NICU doors they said goodbye.

I now know that NICU never leaves you and the emotions that you feel as you leave are often complex and conflicting. I used to work in NICU, but I had no idea what it was like. 

You see, as an Occupational Therapist I had worked with premature babies in NICU, critically ill children in paediatric intensive care and children with life limiting conditions. In these settings a considerable part of my job was to enable parents to fulfil their occupations as mums and dads. Often teaching students of the importance of giving parents the opportunity to be parents I never imagined that I would be that mum, the one who stands by watching and waiting, feeling helpless.

Pregnant for the first time my GP asked which hospital I would like to be booked into, I responded without hesitation. If anything was to go wrong I wanted to be at a hospital where I knew and trusted the neonatal services. Little did know that six months later I would be walking through their doors as a NICU mum and that I would hardly recognise the medical environment where I had once worked.

Alarms, bells and buzzers – part of the background noise for staff; but as a mother beside an incubator the alarms and buzzers could cut straight to your very core.

Hand washing – for staff part of the everyday routine; for parents not only a delay in being able to see their baby, but a time where anxieties around infection are felt or a time to worry about how your baby will be when you see them.

The ups and downs of NICU – part of the course for NICU staff, all to be expected; for parents, even the smallest bump along the way can hit you hard.  

Touching, handling, changing and holding – second nature to an experienced NICU nurse; scary, frightening, overwhelming and precious to parents.

I used to think I knew what NICU was like; I had no idea.

As an Occupational Therapist, tiny babies, poorly children, anxious parents, lines, machines and tubes was what I did.

As a mother I did not recognise this medical world in which I had worked and had felt so at home. The machines and monitors seemed alien to me, the smallest bump hit me hard and the sound of alarms and buzzers still stop me in my tracks. Becoming a mother, but not able to be a mother, I felt lost.

I thought I understood the importance of enabling mums to be mums in neonatal and intensive care. I did know the importance – it is vital; but I had no idea of the lasting trauma and the overwhelming sense of emptiness and loss mothers can experience in NICU.

I reflect upon my journey often in my work today, knowing that my intervention and care for families is improved through empathy and understanding.

To know and understand a parent’s journey through NICU and beyond is key if we are to truly offer the right support and care. Only those who have been there though, those of us who have experienced NICU first hand can truly understand, which is why speaking openly and honestly about our experiences is so important, together raise awareness one step at a time. 


Catriona Ogilvy has worked in health and social care since the late 1990’s. Qualifying as an Occupational Therapist in 2002 she has worked in a number of large teaching hospitals treating children and young people and caring for families. Catriona was chair of the College of Occupational Therapists Specialist Section for Children and Young People (2009 – 2011) and founded The Smallest Things Premature Baby Charity in September 2014 following the premature birth of both her sons. Alongside her charity work now, Catriona is still a Children’s Occupational Therapist, working largely in the community and specialising now in Special Educational Needs.

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