Fifteen million babies are born prematurely every year around the world. Eight thousand of those babies are born here in the United Kingdom, all requiring specialist NHS care.
The world of the neonatal intensive care unit is often hidden behind closed doors, where fragile new lives are housed in incubators and where parents anxiously wait. Today, World Prematurity Day (17 November), is a day to raise awareness of babies born too soon. A day to celebrate babies who went home and a day to remember and celebrate babies who sadly did not leave hospital.
Nothing can prepare you for parenthood, but the sudden interruption of pregnancy, the trauma of a premature birth and the uncertain world of NICU means that the parents of babies born too soon need very real and specific support. A recent report by the leading premature baby charity Bliss, however, reveals that nearly a third of neonatal units in the UK offer no psychological support for families and we know there remains a postcode lottery to access maternal mental health support in the community.
Until is happens to them, not many people know that maternity leave begins the day after birth when a baby is born prematurely. For parents this can be days and weeks before they get to hold their baby for the first time and weeks and months before they are able to bring them home.
I used to work in neonatal intensive care; I thought I knew what NICU was like. I had no idea!
When my first son was born 10 weeks early I found myself on the same unit in which I used to work – I hardly recognised it. The stifling heat, the beeping monitors, the mechanical way my tiny baby’s chest rose and fell as the ventilator pumped oxygen into his lungs – I was suddenly in a very different world. Feelings of grief, guilt and anger are all common in NICU, yet no one is there to tell you that those feelings are entirely normal and there is limited support to help parents through the ups and downs.
Leaving hospital can come as a relief, yet studies repeatedly show that parents who have spent time in NICU are at increased risk of mental health difficulties, with up to 70 per cent of mothers reporting anxiety and symptoms of post-traumatic stress disorder in the months after leaving hospital. It was my own experience of PTSD that led me to start the Smallest Things campaign, raising awareness of the hidden cost of NICU and campaigning for more support for parents during their stay and beyond.
Over 10,000 people have signed our petition to extend statutory maternity leave and pay for mothers of babies born too soon. This would give back time lost in hospital, precious time to bond with their baby. It would also allow baby more to develop and mother more time to recover before returning to the workplace. Recovery is only possible, however, when the specific needs of parents who have journeyed through NICU are recognised and when timely access to specialist services are available. The appointment of shadow minister for mental health is very welcome and I hope to see the Labour party continuing to campaign for greater access to and more support for those with mental health difficulties.
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Catriona Ogilvy works for the NHS. She is the mother of two boys born early and is the founder of the @_SmallestThings campaign. She tweets @Catriona_Ogilvy
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