He was taken from me at just two hours old. Alarms sounded, nurses rushed in, codes were called and echoed through the hospital hallways. My husband and I stared at each other in disbelief as we each came to the realization that the codes were meant for us; everyone was rushing into our room because something was wrong.
At two hours old he was taken away from me and rushed to the NICU as doctors tried to determine what exactly was wrong.
By the next morning I would find out that my son would require life-saving surgery and that it was not something our local hospital was equipped to perform. He needed to be sent to a children’s hospital, and needed a higher level of care than available at any of the local hospitals. Just a few days later our son had been transferred via ambulance and spent the better part of a day in surgery.
I spent the next hours, days, and weeks getting to know my son in a hospital NICU. I sat beside him day in and day out. It was over the hum and melodic noise from the monitors that our relationship grew.
In the months and years after he was released from the hospital and continued to get better I battled difficult and often debilitating depression and anxiety.
I was a changed person.
I felt the need to talk about my experience. All the time. It was my therapy, though I didn’t realize it at the time. I desperately searched for someone, anyone who could relate. I had a hard time finding that in my social circle.
I did what many of us do when we are searching for answers. I turned to Google.
Almost every piece of information and support group that I found was concerning premature babies. And with reason, approximately 1 in 10 babies are born premature worldwide, 1 in 12 in Canada and many, if not most, of those babies will require a stay in the NICU. That leaves a lot of parents searching for information, support and guidance.
While 1 in 12 babies are born premature, 1 in 3000-5000 babies are born with TEF (the condition my son was born with). Since we were in a specialized children’s hospital, many of the parents that I met during our NICU stay were facing similar struggles; rare illnesses, birth defects, surgeries and long term complications. I met babies who were born with such rare illnesses that they were flown in from all over the world. There was an unspoken understanding that permeated through the NICU waiting room, however once our NICU stay was over most of the support groups were aimed at parents of premature babies.
My baby wasn’t a preemie.
Nevertheless I needed to find others who understood where I was mentally so I turned to the parents I met in online NICU support groups to exchange tears, share advice and sometimes just to vent. We may have ended up in the NICU for different reasons but we were all experiencing similar pain. When the rest of the world thought I was just being over protective if I asked family and friends with a cough to stay away, the parents in the NICU support groups understood my request.
Yes we were different; my baby might have been small for a full term baby but he looked almost HUGE beside some preemies, but we were allies battling haunting memories that could, if we allowed them to, take over our lives.
When I initially joined the NICU support groups I felt like I didn’t belong but soon I learned that though I’m not a preemie mum, I am a NICU mum and both of us wish we were members of a different club.
September is NICU awareness month. Though every NICU story has a different beginning each of us involved will carry the scars with us until the very end and sometimes all we need is to feel understood.