In 2011 I thought I was going to lose my baby. Actually, I was assured time and time again that I would go into labour before they could save my little girl. We were told our baby would have a 1 in 100 chance of survival – in NSW babies born before 24 weeks are not resuscitated because their quality of life is poor. If they survive, they have a 1 in 100 chance of being ‘in-tact’. In tact means they will most likely have some minor movement and developmental problems requiring ongoing treatment, but they will not be severely disabled or developmentally delayed.
The night my daughter was born I couldn’t look at her. I heard her tiny cry, like a lost kitten, and saw her miniature 955g frame and turned my head away, shocked at how fragile she was. How my body had failed her at just 26 weeks gestation. Being such an early gestation and low birth weight, she was classified as a microgram – she was about the same size as a Sophie the Giraffe teether. My story is not unique. 45,000 babies are born prematurely, (before 37 weeks), each year. That is a staggering 8%. Of those, more than half will spend time in a neonatal unit called a NICU, (a Neonatal Intensive Care Unit), and 1,000 will die. And yet it still remains one of the lesser understood infant phenomenons. Though varying by gestation, prematurity can mean a range of disorders and illnesses, some ongoing and some temporary. It often means suppressed immunity, developmental delays, chronic lung disease, cerebral palsy, or failure to thrive.
Not surprisingly, due to the incredibly challenging hospital stay facing premature babies the rate of Post Traumatic Stress Disorder as well as Post Natal Depression in parents of these infants is staggeringly high. Though this connection is only just beginning to be examined, a recent study from Duke University found some startling results: 29 of 30 participants had two of the three symptoms of PTSD, with 16 participants having all three. It’s difficult to understand unless you have been on bed rest awaiting a heartbreaking, life changing event, or experienced the ups and downs of a NICU for months on end.
When I was on bed rest, I would watch the clock ticking second by second, knowing that each day meant a 2-3% chance increase in my daughter’s chances of survival. I became acutely aware of the value of minutes and seconds. Once in the NICU that tick of the clock was replaced by the beeps of machines, each one intrinsically tied to my daughter’s survival. A NICU stay is nothing if not traumatic, and often there are other small children to consider from both a practical and emotional perspective. Doctors in the NICU are fond of warning parents that having a prem baby will inevitably mean taking two steps forward and one step back. They are referring to the medical implications of having a fragile, sick child who will often need help with breathing and feeding for months, and is at the mercy of infection. Dr Richard J Shaw is an associate Professor of Psychiatry authored a recent Stanford study which examined the psychological impacts of prematurity on families. He outlines three distinct traumas which face NICU parents;
- Early delivery, which may be unexpected
- Watching your infant child having traumatic medical procedures and witnessing other infants going through similar experiences, and
- Getting serial bad news.
Quite often, parents ignore their own emotional trauma to deal with the medical trauma facing their tiny baby.
This Wednesday April 15 is Wear Green For Premmies Day. It aims to celebrate and commemorate those babies born to soon, to support their parents, to raise awareness for prematurity and to raise funds for NICU hospitals. Great things can come in tiny packages. Albert Einstein, Winston Churchill, Isaac Newton, Charles Darwin and Stevie Wonder are all the result of premature birth and all have had a decisive influence on society as we now know it. My own 4 year old daughter is only just on the charts for weight and below the 25th percentile for height, but her life saved by the doctors and nurses in the NICU is very much cherished. You can support the families of premature babies by wearing green on Wear Green for Premmies Day, or you can donate to Lil Aussie Prems and several NICU hospitals by clicking here. Or, by simply understanding more about prematurity, you can support a community of families that have experienced a significant trauma.
A version of this article appeared on North Shore Mums, (www.northshoremums.com.au)