February 14, 2017 – Valentine’s Day – is a date that Stacie Kessel will never forget. That was the day she learned that her unborn son Bodi would likely be born with Down syndrome, and face a lifetime of mental and physical challenges.
“The blood test indicated Bodi had a 98 per cent chance of being born with Down syndrome,” Stacie says. “It was a shock, but at least we knew what we were dealing with, and could start preparing.”
Bodi arrived early, at 33 weeks, and Stacie and her husband Dave discovered the Down syndrome was coupled with several immediate medical challenges, including a perforated bowel and blockage of the small bowel requiring surgical care.
Fortunately, Bodi was under the care of the top-notch medical teams at the neonatal intensive care units (NICU) in Edmonton (where Bodi was born), and at Regina’s General Hospital (where he was transferred after three weeks). In Regina, the team had access to the latest medical technology, made possible by Hospitals of Regina Foundation donors.
“You really gain an appreciation for the amazing staff in the NICU, and the technology they use to help babies,” Stacie observes. “between the specialized beds, being on a ventilator after his surgeries, even having breast pumps there – all of these were so important in the care Bodi received.”
Bodi left the NICU after 45 days, and has returned to the hospital for a number of diagnostic tests as his medical team continues to search for the cause of a series of infantile spasms/seizures. To date, he has had nine electroencephalogram (EEG) tests to evaluate the electrical activity in his brain, along with three X-rays, two ultrasound tests and an MRI.
“He receives an EEG quite frequently to monitor for any abnormalities and to watch for signs of the seizures/spasms,” Stacie explains. “This is so important as not all seizure activity is visible, so even when you think he is doing better, the EEG can show differently. This allows us to adjust his medications, if needed.”
Despite his bumpy start to life, today Bodi is enjoying life with his parents and older sister Decklynn. He’s been seizure-free since April, and is a regular visitor to the Children's Program at the Wascana Rehabilitation Centre every few weeks for therapy services. Bodi’s support team includes a pediatric neurologist, a pediatrician, as well as occupational, physical and speech therapists.
“I’m actually amazed at how well Bodi’s team all works together,” Stacie observes. “Everyone is on the same page and working as a unit to give him the best care possible. We’re so lucky to have access to Regina’s pediatric services here in southern Saskatchewan. It’s hard enough when your child has complex challenges, but I can’t even imagine what it would be like if we had to travel further away without that support from family. We’re so grateful for the amazing health care right here at home!”
“Bodi’s story is a reminder of the importance of investing in pediatric services for children across southern Saskatchewan, right here at home.” says Lisa Green, vice-president, development, Hospitals of Regina Foundation. “Our donors and supporters enable the Foundation to invest in life-saving technology each year that is helping families like the Kessels live better lives.”