- Liz Barrera
World Prematurity Day – Why It Matters
At my 30 weeks prenatal appointment, I confided in my nurse that for the last two weeks I couldn’t seem to control my bladder anymore and kept having accidents! We laughed over pregnancy woes and discussed kegel exercises. I then causally admitted that in my desperation, I Googled my symptoms and learned about women whose waters broke early in their pregnancies. I laughed nervously because that wasn’t happening to me, right?
An immediate and quick pelvic exam confirmed that I had indeed experienced a Preterm Premature Rupture of the Membranes (PPROM). I was leaking amniotic fluid. Everything after that was a whirlwind. My doctor explained that I was at high risk of infection that could endanger both my baby’s life and my own. I’d have be admitted to the hospital right away, and that, very likely, my baby would have a preterm birth. After a week of bed rest, steroids, monitoring, drinking copious amounts of water to maintain proper amniotic fluid levels, tears, and praying I’d make it seven more weeks, I went into labour and my son was born prematurely at 30 weeks and five days. I now had a preemie.
I am sharing with you my experience to support World Prematurity Day. Every year, November 17 is reserved for honouring preemies, their parents and their dedicated caregivers. Throughout the day, social media feeds light up with stories tagged #WorldPrematurityDay and #PreemiePowerCanada, and Canadian landmarks are illuminated in purple at night.
According to the Canadian Premature Babies Foundation (CPBF):
About 8 per cent of babies are born prematurely in Canada (before 37 weeks gestation) and that proportion is increasing.
Preterm birth is the largest cause of infant death in Canada and causes approximately one third of all infant deaths.
Most premature babies spend the first part of their lives in a Neonatal Intensive Care Unit (NICU).
The CPBF strives to raise awareness of issues surrounding preterm birth, provide a platform for Canada-wide education and research that will help more families and communities, and support the best standards of care for premature babies as it currently ranges between different provinces and hospitals.
“[Having a premature baby]…affects the entire family: emotionally, mentally, financially,” says Fabiana Bacchini, a CPBF board member and author who openly shares her story to help others. Fabiana overcame infertility, losing a baby, and caring for the surviving twin for five months in the NICU who was later diagnosed with Cerebral Palsy.
“Premature babies may have a lifetime of medical challenges, others will show learning and behaviour issues later in life. For many families, it’s very hard to recover from the emotional trauma. NICU mothers are at a higher risk of Postpartum Depression and fathers a higher risk of Post Traumatic Stress Disorder (PTSD).”
Truthfully, the preemie baby experience is excruciating and traumatic. Yes, I was so grateful that my child was alive, but there were undeniably recurring moments of devastation and heartache. I was fortunate to hold my baby after his birth, some preemie parents have to wait weeks before that is possible, but I was filled with sorrow seeing his tiny body struggle with breathing tubes and monitoring wires. The night I was discharged was particularly painful because I had to leave without my baby. He stayed in the NICU for exactly 60 days. The next two months were spent:
Managing 14-hour day shifts in the hospital
Waking up at 2 a.m. and 6 a.m. at home to adhere to the strict, around-the-clock breast-pumping schedule (it wasn’t all bad, since I’d use those times to call the NICU nurses for updates throughout the night)
Meeting with his medical team daily to discuss treatment plans
Reading all the discouraging facts on premature births and patient outcomes
Enjoying precious but limited times holding my baby
Watching nurses revive him whenever he stopped breathing
Listening to the constant beeping and machinery sounds surrounding his isolate
Guarding pictures of him from even friends and family after hearing too many times that a preemie baby looks scary
Living through the vicious cycle of tiny gains always accompanied by greater setbacks
Once the baby comes home, it’s a whole new ball game. We isolated ourselves in our home to avoid infection. We had to quickly adjust from having full-time expert medical support in the hospital, with high-tech equipment blaring whenever my baby’s vitals dropped, to learning how to cope completely alone. We had to balance medications and special formula feedings, and keep up with our demanding doctor and specialist visitation schedule.
Throughout it all, I was consumed with jealousy. I longed to have the normal birth experience without the trauma. It was so painful watching my baby having to work harder for the smallest achievements that were simple for full-term babies. I was also full of guilt.
“I felt so alone,” explains Payal Vermani, a devoted mother of two whose first child was also born prematurely. “I didn’t want to talk to anyone about my situation because as a mother of a preemie, some part of you always feels like it’s your fault.”
Looking back, Payal wishes she had seen things differently. “If I could give one piece of advice to new parents of a preterm baby, I’d tell them that no matter how bleak it seems, try to stay positive because it will get better,” says Payal. “You can’t change what happened, but what you can do is choose to be a loving mom and enjoy your baby – often times I forgot I was a mom and instead played nurse, therapist, and doctor full-time.”
Fabiana agrees that although families of premature babies feel completely powerless to the complications of a preterm birth, one of the most important decisions you can make is how you choose to move forward.
“You always have the power to control how you think about what is happening to you and learn to accept the situation you’ve been given,” advises Fabiana. “You won’t be able to change having a baby in the NICU because it’s out of your control, but you can change the way you look at your baby. I was always afraid I was going to lose my child because I lost his twin but when I learned to focus on the present, I learned to celebrate every day as having him for one more day.”
Fabiana shares her experiences and learned life lessons in her new book, From Surviving to Thriving, now available on Amazon.ca, Amazon.com and her website handfullhearts.com (note: a portion of book proceeds purchased through her website will go to support NICU programming).
“I use my story to empower other families and give hope that life goes on,” she says. “Even after living a traumatic experience we can have fulfilled lives.”
Fabiana’s book is a resource I would have found tremendously valuable in my early struggles as a preemie mom. Knowing and being able read the journey of others who have overcome and survived what I was going through would have been a welcome support. I encourage more families and friends who have been touched by a premature baby experience to share their stories this World Prematurity Day. Let others know that even in the darkest of moments, there is light at the end of the journey.