In her new book, a Kanata mom chronicles her daughter’s first year of lifeAt only 23 weeks pregnant, Kanata mom Amy Boyes was hospitalized and on bed rest, in danger of going into labour. As the seriousness of the situation sank in, Amy and her husband Josh had the first of many difficult conversations. When born that early, many babies are affected by long-term disabilities, and others don’t survive. Amy and Josh knew that if their baby was born before 24 weeks, they would tell doctors not to resuscitate her.
A few days passed, and Amy’s condition stabilized. They transferred to a hospital with a Level IV NICU, or neonatal intensive care unit, the highest level of care available. At 24 weeks pregnant, Amy went into labour and Madeline was born. At 16 weeks early and weighing just over a pound, she was among a very fragile class of babies known as extremely premature.
“She started crying right away,” says Amy. This was a good sign, because a baby’s lungs are one of the last organs to develop. Despite Madeline’s healthy cry, she needed to go directly to the NICU. “They picked her up and whisked her away,” Amy remembers. It would be a month before she would hold her daughter for the first time.
Madeline is six years old now, a joyful grade one student with high energy and a love of bike riding. “Maybe it was that energy that carried her through,” says Amy. The first month was very difficult. She had a heart murmur. She developed an infection that turned out to be E. coli. She had just recovered when she acquired pneumonia, and her lungs started to collapse. She lost weight, dropping down to just 520 grams. Through all of this, Amy and Josh learned all they could from the medical professionals caring for their daughter. The couple came to the hospital twice daily to participate in patient rounds with the nurses and neonatologists.
“There was a lot of support,” she says. They were offered counselling and literature to prepare them for making decisions about Madeline’s care. “These are not easy decisions,” says Amy. When Madeline was at her most ill, Josh and Amy had to decide whether their baby should get a high-dose steroid injection to prevent her lungs from collapsing. Although it was potentially lifesaving, it could increase the risk of neurological damage.
“We had nothing else to do,” she remembers. Madeline grew stronger after the injection, but Amy remembers how difficult it was to make decisions from both an ethical standpoint and the position of being a parent. “You want to give this child a good life,” she says, “but you’re deciding these things for another human being.”
During Madeline’s first year, Amy began writing about Madeline’s time in the NICU. The writing grew into a memoir, Micro Miracle: A True Story, published by Signature Editions. “Madeline’s journey exemplifies the human struggle, and I wanted to share that story,” says Amy. She also hopes people support other families in similar situations. “Parents go through a lot. They’re working with the doctors the best they can. Try not to offer too much advice,” she says, and then adds, “and bring food.”