This year for me World Prematurity Day is all about raising awareness of the difficulties and realities faced by parents of premature babies. You don’t really know what to expect when you plan a family and begin the journey of bringing a new life into the world. But for parents of premature babies the reality of life on a neonatal intensive care unit is so far removed from what you could ever imagine.
The journey doesn’t stop though when you leave neonatal care, at home there are new challenges to face. You finally brave it out of the house and visit baby groups – and then it comes, the dreaded question, how old is your baby? I know I’m not alone in rounding down my baby’s age and even then seeing the quizzical looks when I would reply that he was 6 months old even though he looked and acted more like a 3 month old (his corrected age). Next comes the dilemma; either explain that he was born prematurely and risk being asked often insensitive and upsetting questions or endure the inevitable developmental comparisons. I didn’t like the feeling I was making excuses for my baby – ‘he’s six months old, but really he’s only three months’ I would hear myself saying. Now, with the benefit of hindsight, I might say that he hasn’t quite mastered sitting independently, but what he has mastered in his six months is to teach himself to breath, to learn the suck reflex and to treble his birth weight – pretty impressive milestones I would say!
Unless you’ve had a baby in neonatal care or a close relative in that position you have no reason to know about life in NICU, so I tried to brushed remarks like ‘I could never have left my baby alone in hospital’ or ‘is he normal now?’ aside. What did get to me though was the response from health professionals in the community, those who I thought would support me but seemingly also had a lack of awareness. I lost count of the number of times I was asked if he was smiling yet – each time I gave the same response, which was – he hasn’t reached his due date yet! I was forever asking that his weight be plotted according to his corrected age and the six week check was almost laughable. I felt like putting a big sticker on the front of his read book saying “remember I’m a premature baby!” Most concerning for me though was the emotional support. It’s well know that mothers of premature babies are at an increased risk of depression and anxiety, yet if I became teary with the GP or health visitors they would quickly change the subject rather than explore my feelings. It was only when I became upset over something trivial and totally unrelated did the doctor ask me how I was really managing.
The Smallest Things campaign was launched two months ago to raise awareness of premature birth and the challenges, both emotional and financial their parents face. Through sharing stories like ours, by speaking with local health visiting teams and GPs and through fantastic programmes such as Miracle Babies currently on television we can slowly lift the vail on the often secret world of neonatal care. Only by speaking truthfully and honestly about our experiences can we raise awareness one step at a time.