When she went for her 20-week ultrasound in her hometown of Sidney, Shawnie Blinko discovered she was having a baby girl. She also learned that her daughter might have kidney complications. But no one could have foreseen just how complex baby Piper’s condition would be when she was born on September 8, 2014.
Piper was born with a collapsed lung and acute kidney failure and was put on life support immediately. She and her parents were flown to Vancouver, where they found out that her thyroid wasn’t functioning properly and her heart had a small opening. Faced with high blood pressure, hypothyroidism and hearing loss, among other conditions, Piper also has what’s known simply as chromosome 7q32.2-7q31.6 deletion. She is the only person in the entire world with the abnormality.
“It had never been reported in scientific literature before,” Shawnie says of the chromosomal condition. “I felt very isolated. Because no one had ever had this before, there wasn’t any information on it. There were moments when doctors weren’t sure she would make it. That’s not something you want to hear after you have your first baby.”
Piper spent the first three months of her life in hospital, overcoming incredible challenges along the way. She will need care throughout her life from specialists in many different departments. The family currently goes back to Children’s every three weeks to three months, depending on her health and her circumstances. Shawnie has been documenting her family’s experiences on a Facebook page called Piper’s Journey – With Kidney Disease and a Chromosome Deletion. It’s a way to rally support for Piper, build a sense of community, and allow people to see just how exceptional this little girl is in the face of so much adversity.
Shawnie and Piper’s father, Christian Bowman, have been amazed at the medical care their beloved daughter has received at BC Children’s Hospital. Not yet a year old, Piper has had several surgeries on her kidneys, which were fused together in a horseshoe shape. She needed a feeding tube and has worked with a physiotherapist. She will soon be operated on for a condition called metopic craniosynostosis, the premature fusion of the suture in the middle of the forehead.
BC Children’s Hospital is uniquely positioned to care for babies with special needs. Dr. Colin White, a pediatric nephrologist, cared for Piper in the hospital’s Chronic Kidney Disease Clinic. With Piper’s kidneys having since stabilized, he explains that the focus now is on ensuring she keeps growing so that her kidneys continue to function well. However, having to treat very small children with dialysis can be a daunting challenge for medical experts and families alike.
“We do have limits; it’s difficult to dialyze babies who are less than two kilos,” Dr. White says. “But for those we can, it’s a life-altering situation. They need to be on the machine every day, seven nights a week, for 12 to 14 hours, until they’re big enough to have a transplant around 10 kilos or two to three years of age. They also need several medications many times a day.
“Technology is always advancing,” he adds. “Our ability to save lives is getting better. But what doesn’t change is the stress on families. I’m always impressed by how much parents do to support their kids. Their commitment is extraordinary.”
Dr. White credits the hard work of multidisciplinary teams when it comes to ensuring sick kids get better and helping families cope. “When you’re caring for very, very young babies, it’s a very large team of physicians, nurses, social workers, dietitians, and others who do the heavy lifting,” he says.
For Shawnie, Piper’s care at Children’s has and continues to go well beyond the medical. For one thing, staff members have always asked her if her family needs any help setting up travel and accommodation while in town for Piper’s treatments. They help make sure Shawnie is taking care of herself, too: nurses offer to hold Piper while Shawnie grabs a quick dinner or has a short nap. And doctors and nurses always make a point of including Shawnie and her partner in Piper’s care.
“Doctors always come to me and ask me my opinion on everything before going ahead and doing something like an ultrasound or changing her medication,” Shawnie says. “They always wanted my input because they knew how involved I wanted to be with her care. I had a lot of questions, and they always have time for them.
“Sometimes they would just let me have a shoulder to cry on,” she adds. “It was more of a support system than a medical team. And if they can’t give the support you’re looking for then they will refer you; they have so many resources. I trust them, and I know they will always do their absolute best for Piper.”
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