Micro Miracle: A True Story
By Amy Boyes
What is the story of Micro Miracle?
Our daughter, Madeline, was born sixteen weeks premature. She was twelve inches long and weighed just over a pound. Her eyes remained fused shut for over a month. Her lungs were extremely underdeveloped and eventually partially collapsed. As with many extremely premature babies, Madeline developed a host of medical issues that required many interventions. As parents, we choose treatments for Madeline knowing that she could not voice her own opinions but had to live with the results of our decisions. So Micro Miracle is both a story about a medical triumph and about parenting under tremendous stress.
Can you give an example of a difficult treatment decision?
At one week old, Madeline developed pneumonia after just recovering from a severe blood infection. We opted to use a steroid that would help clear her lungs, but the steroids increased her risk of developing cerebral palsy. That didn’t happen, but at the time it was difficult for my husband and me to approve treatment knowing the risk.
Did you have warning that you were going to give birth early?
I had been hospitalized for a week before she was born in an attempt to delay her birth. During that time, we received counselling about the risks associated with extremely premature birth, so we knew how dangerous the situation was. However, no amount of counselling can ever really prepare you for life in the NICU.
NICU. What does that stand for and what is it like?
The Neonatal Intensive Care Unit treats the sickest and smallest newborns. For much of her hospitalization, Madeline was assigned her own around-the-clock nurse and was supported by a ventilator and intravenous line. A variety of sensors moderated levels such as oxygen saturation and heart rate. Whenever something dipped, heart rate, for example, an alarm would sound. The alarms had different frequencies and speeds depending on the severity of these dips, and the total noise from all the babies created quite a loud environment.
So not an exceptionally peaceful environment?
No. The staff certainly did their best to create a quiet space, but mainly the NICU is a shared hospital room with very sick babies. There’s a lot of activity.
How did the staff relate to you, the parents?
The team was fantastic. Over Madeline’s hospitalization, we encountered well over a hundred professionals, but they all took time to explain each procedure, each detail of a treatment plan. And, in many ways, we were their patients too.
What do you mean?
Giving birth to an extremely premature baby is very stressful for parents and the staff knows that. Not only did they train us how to care for Madeline and explain what they were doing, but they also watched us for signs of physical or emotional fatigue. They answered many of our questions right at the incubator but also offered us further support from hospital counsellors.
Was that something you wanted?
I had a team of family and friends supporting me so, no, I didn’t opt for counselling. Perhaps, I just didn’t have the time. I am a self-employed music teacher, and I had planned to take maternity leave at the original due date, not when Madeline was born sixteen weeks early. So I went back to work ten days after giving birth.
What was it like to return to work with a baby in hospital?
Exhausting. But being busy helped pass the time quickly. We were not able to touch or hold Madeline for many weeks after she was born, so we didn’t need for us to spend entire days at the hospital. We would visit for an hour or so in the morning during doctors’ rounds and then again at night.
And how long was Madeline hospitalized?
What is Madeline’s life like now?
Madeline is a healthy five-year-old who enjoys kindergarten and playing with friends. She reads quite well and enjoys physical things like swimming, sledding, and bike riding. She takes piano lessons and makes up little songs every day. Madeline is a happy kid, and we’re very grateful that she survived her early life experience with no noticeable effects.
What led you to write Micro Miracle?
I started with journaling during Madeline’s naps. Premature babies have suppressed immune systems, so we didn’t leave the house much the first year. Naps were a great time for writing, and my journal grew into this book.
What do you hope readers will take away from Micro Miracle?
We had the privilege of watching Madeline grow from a tiny, broken preemie into a healthy child. Modern neonatology has progressed to a place where she was supported through extremely fragile stages. That, in itself, is amazing, but Madeline’s journey also exemplifies the human struggle—the desire to live—and I wanted to share that story with readers.