Nothing can really prepare you for parenthood; but for parents of premature babies the time to plan and the anticipation of a new arrival is dramatically interrupted. Plans to decorate the nursery and dreams of holding your baby close for the first time are shattered as shocked and numb you find yourself in the neonatal intensive care unit (NICU).
Neonatal intensive care – a scary sounding place and one you are unlikely to chance upon. As it happened I had worked in neonatal care as a children’s occupational therapist and yet when my own son was born at 30 weeks I found myself lost in a medical world I did not recognise. For eight weeks I visited my baby every day, trying to become a mother in a unit where rows of incubators housed babies at the very edge of life. All around me monitors beeped and alarmed as they seamlessly chimed with the uncertainty of our journey.
Given the nature of NICU – the pain of leaving your fragile baby each day, the feelings of emptiness and grief, the uncertainty and ups and downs, the lines, wires, monitors and alarms, not to mention the security buzzers at the entrance of the unit or the constant rigorous hand washing – it came as no surprise to me that parents who have experienced premature birth are at greater risk of post natal depression, anxiety and post-traumatic stress disorder (PTSD). In fact, it is thought that more than half of mothers are affected by anxiety and PTSD following NICU and approximately 40% (compared to5%-10% of mothers who give birth at full term) develop post natal depression. And yet, despite these statistics, there is little talk of the mental health needs of parents following NICU and the 2015 Baby Report by neonatal charity Bliss highlights the lack of psychological support for parents in hospital.
I can still recall the moment I first felt panicked and sick with PTSD; I was returning to the neonatal unit for a routine 4 week follow up. Walking out of the car park and into the hospital I could hear and feel the sound of my heart pounding in my head. I could hear the beep, beep, beep of monitors and the motion of the ventilator as air filled my son’s lungs. If I closed my eyes all I could see were wires and the mechanical rise and fall of his tiny chest. I felt sick to the bottom of my stomach and although I felt as if my body would completely shut down there was nothing I could do to stop it.
No one warns you about the flash backs and PTSD often presents itself after the acute phase of neonatal care when you are alone. The support network of the hospital can disappear overnight and you are left to wonder how on earth you made it through. Family and friends with good intention assume that the difficult times are behind you and the idea that discharge would be the end of your neonatal journey suddenly seems farcical.
The usual routes where a mother may seek support are often closed to mothers with premature babies. Clinics or parents groups can be out of bounds due to the infection risk to premature lungs and mum and baby groups can lead to a host of well-meaning questions that instead exacerbate negative feelings or bring back painful memories. “The longest hour of my life” is how one mother recently described an NCT group, “I wanted to run and hide” said another. The reality of becoming a mother in NICU is so far removed from the ‘norm’ that mothers become isolated and simply cannot connect with the experiences of other families. Many believe they are alone in their thoughts of loss or anger and remain quiet about the flashbacks or anxiety they experience. On the contrary though, we know that a significant proportion of parents feel this way and I write about my experiences as a NICU mum to raise awareness and to let others know they not alone.
I hope to see more parents speaking and writing about their experience of life after neonatal care. As a NICU mum PTSD will always be lurking around the corner and it is only by speaking openly and honestly about our journeys that we can raise awareness, educate and call for greater support.