NICU parents are at significant risk of mental health problems, and they're slipping through the cracks.
When parents are finally able to bring their premature baby home from the hospital, they receive little to no ongoing support. The baby will receive the appropriate medical follow up and their progress will be monitored for years to come, but the emotional and mental wellbeing of the parents is often forgotten and neglected. As a parent of two premature babies, this only exacerbated my feelings of grief, loss and isolation. When you are not offered or given access to any supports, you assume that you are expected to cope and to manage on your own. You assume there is something wrong with you if you can’t, that you are alone in your feelings. And with that comes shame.
Yet research shows us this is absolutely not the case. It is well documented that rates of postnatal depression (PND) are as high as 40% among women with premature infants, compared to 5-10% of mothers who give birth to full term healthy babies. And more than half report symptoms of anxiety and post-traumatic stress disorder (PTSD). A world-first study has also found that mothers who do not receive psychological help after giving birth prematurely are five times more likely to suffer depression than those who do, even eight years after their children are born. In Australia, more than 26,000 babies are born preterm each year. It’s not hard to do the maths and understand the extent of this psychological harm – the rates are way too high.
And it’s no surprise! A premature birth is typically sudden and traumatic, the weeks or months that follow in the NICU are fuelled by shock, emptiness, and uncertainty, and then the support network of the hospital can literally disappear overnight. You are finally home, and while discharge may seem to signal the end of the difficult times, sometimes it is just the beginning. The shock wears off and the reality sets in and you are on your own.
NICU parents, especially mothers, are struggling with mental health, and we aren’t getting the help we need. We are slipping through the cracks. Some may argue that the majority of NICU’s have social workers and psychologists available to perform an assessment, but this is not routine (and I know I certainly didn’t have the awareness or capacity to even acknowledge my feelings or ask for help during that time). And then what happens beyond the NICU? A routine six-week postpartum check-up you say? You mean the one that is often crammed into a 15-minute appointment with a casual ‘how are you doing?’ at the end, despite a long NICU stay and leaving my baby in hospital every day? The one with the tick box questionnaire that asks if I’ve blamed myself unnecessarily, or been worried or anxious for no good reason, or if I have felt scared or panicky for no good reason? The questionnaire that makes us once again question if we’re just meant to be feeling like shit because we’ve experienced something traumatic? Sadly, this is not applicable, and it is not enough.
These are damning statistics and they’re not improving, yet we are so far behind. It truly shakes me to my core. I’m so thankful that there are now online support networks and communities where parents can reach out to people who understand without judgment. But the Department of Health certainly have a long way to go in recognising this hidden emotional and economical cost of neonatal intensive care and supporting this vulnerable and sizeable group of our society. We need to be intervening earlier and appropriately screening the 10,000+ women in Australia who are at considerable risk of postnatal depression, to help them feel safe and supported at a time when they need it most. So why aren’t we?
Please share this post and tag your NICU friends - we need to be heard and raise awareness in order to bring change. Watch this space.