|Condition:||Maternal, Juvenile Idiopathic Arthritis, Body-Stalk Anomaly, Club Feet|
“It has been a whirlwind,” said Alexandra Lins, reflecting on the health care journeys she and her children have endured.
Soon expecting her fourth bundle of joy, Alexandra’s unwavering determination to have a beautiful family shines through despite the daunting health challenges she has encountered with her preceding three children.
Alexandra and her husband Mitch have faced unique trials as parents. Their first child, Scarlett, struggled with polyarticular RH factor negative juvenile arthritis; their second child, Aiden, sadly passed before birth due to body-stalk anomaly; and their third child, Ellis, was born with unilateral clubfoot.
Alexandra and Mitch from Humboldt, SK are grateful to receive both maternal and pediatric specialized care at Jim Pattison Children’s Hospital (JPCH), where nearly *500 Saskatchewan communities are served.
“I feel blessed that living in Humboldt, we are an hour away from JPCH and don’t have to travel far to receive exceptional care,” said Alexandra.
After an uneventful birth in February 2019, 18-month-old Scarlett contracted Rhinovirus, and after a few weeks her condition became significantly worse. By mid-July she was unable to bear weight on her left foot and day after day she would scream in pain. After visiting over half a dozen emergency rooms and receiving no clear answers, Alexandra felt at a loss. Scarlett was barely eating or drinking and was losing weight quickly.
On the long weekend of August 2020, they went to the Jim Pattison Children’s Hospital emergency room for the first time. “The doctors and nurses who saw us that day actually listened to what I had been saying and trusted me. It was the biggest relief to be heard,” Alexandra explained.
After spending most of summer 2020 in JPCH and undergoing multiple tests throughout the fall, in November 2020 Scarlett was diagnosed with juvenile idiopathic arthritis, which causes pain and inflammation of joints, including stiffness, swelling and loss of motion. She received a joint injection that winter and by December 2020 was able to walk again.
Since Scarlett’s diagnosis, she has tried numerous oral medications, and in the last two years, Alexandra and Mitch have been giving her injections. Now as a four-year-old, Scarlett is doing well and is considered in remission.
Alexandra and Mitch were thrilled when they conceived their second child Aiden, but unfortunately things took a turn in what Alexandra describes as “the hardest prenatal appointment” she has ever had.
During maternal serum screening blood work, Aiden was flagged for spina bifida, and in an ultrasound in the JPCH fetal unit, it was discovered that Aiden had a rare condition called body-stalk anomaly. This meant everything from his heart to his pelvis was outside of his body.
“Your son will never live outside your body” are words no parent ever wants to hear from their doctor, but unfortunately that was the case for Alexandra and Mitch.
“We had to make the very hard decision to terminate the pregnancy,” said Alexandra. At 20 weeks gestation, in August 2020, Aiden was delivered. He weighed just four ounces and was six and a half inches long; he fit into the palm of his mother’s hands.
“It was very challenging, navigating with Scarlett’s diagnosis and losing a child within a matter of two weeks,” Alexandra continued. After losing a child Alexandra’s fear of the unknown was high when she began her third pregnancy, with her son Ellis.
“There was a lot of anxiety when I became pregnant with our son Ellis, who is now two. Every test and every ultrasound was worrisome as we never knew what to expect,” said Alexandra.
Alexandra was followed closely by her doctor at JPCH, having multiple ultrasounds to ensure her baby was doing okay. At 20 weeks pregnant it was discovered that Ellis’ right foot was a clubbed foot. Six days after Ellis’ birth in November 2021, he was put in his first cast at JPCH to begin the process of correcting his unilateral clubfoot. Eight weeks and six casts later his foot was corrected.
Ellis was incredibly fortunate to avoid having a tenotomy surgery and transitioned right from the casting into wearing his boots and bar 23 hours a day, seven days a week and shortly after only at night time. He will continue wearing these until he is four years old.
Alexandra plans to have her fourth child at Jim Pattison Children’s Hospital due to the exceptional care she has received. Reflecting on their family’s health care journey, the Lins’ express gratitude to JPCH.
“Looking back it felt like our world was crumbling around us. Now, because we’ve had such great care it feels like it was just a small blip in the road. At the time, it was very overwhelming and we’re very thankful for the teams that we’ve had and the relationships we’ve built with those teams and the nurses that call and check in on the kids are amazing and go above and beyond,” said Alexandra.
“People should donate to Making Spirits Bright because you can make a huge impact on people who are experiencing care at Jim Pattison Children’s Hospital. No matter how big or small, I know the difference that having the specialized care when we were in the hospital meant the world to us..”
Donate now to Jim Pattison Children’s Hospital Foundation’s Making Spirits Bright Campaign to help Saskatchewan mothers like Alexandra, and her family including Scarlett, Aiden, Ellis and Alexandra’s soon-to-arrive newborn.
*Statistics from SHA reporting period April 2022 to March 2023