From left: Megan, Ben, Owen and Alex Gale. – Photos courtesy of Megan Gale
By RYAN KING
Owen Gale has lived with spina bifida all his life and has undergone multiple surgeries to improve his health, but with the support of his family and his own inner strength, he does not let circumstances get him down. The Gale family currently lives in Nova Scotia but Owen’s father, Alex, is originally from Port aux Basques. The family has set up a GoFundMe page to help with ongoing expenses, as Owen just underwent another round of surgery in October. His mother, Megan, said Owen has remained strong throughout his challenges.
“Owen is our 13-year-old, sports-loving, music-loving, happy, silly, strong, stubborn son who is the light of our life. Owen is always the light and laughter wherever he is. Owen is the strongest kid I know and takes any challenge in stride and works through it with grace and determination.”
Megan shared that Owen has myelomeningocele, the highest form of spina bifida, which is a type of neural tube defect, and hydrocephalus, which is extra fluid buildup around the brain. The fluid buildup necessitated a ventriculoarterial or ventriculoperitoneal shunt to correct.
“The shunt drains the extra fluid off the brain to another part of his body, where it is then absorbed. Owen also suffers with bilateral hip dislocation, a neurogenic bladder and bowel along with other minor ailments such mild clubbed feet, which where surgically fixed at a young age, ADHD, and a form of childhood epilepsy (which he has thankfully outgrown), just to name a few,” said Megan.
As a result of these conditions, Owen has undergone upwards of 18 surgeries over his 13 years, procedures both major and minor.
“Owen has had about 12 major life-saving surgeries. Owen’s first surgery was shortly after birth and his most recent was just yesterday (Oct. 21st) and one to come on Oct. 29th. Unfortunately, Owen will likely need further surgeries in the years to come for different ailments,” confirmed Megan.
Owen’s health issues may have presented huge challenges for himself and his family, but Megan would not wish to change it because it has helped shape them into the people they are today.
“We, my husband and myself, had Owen at a young age. Finding out we were about to have a child with a disability was hard to hear, but we made the decision early into his diagnosis at 6.5 months in utero that we would love him unconditionally and give him the best life possible, and to take on whatever challenges were to come. We have come across financial, housing, work, and many other challenges along the way due to his amount of time spent in hospitals, the need for accessible housing/vehicles, and the costs that go along with missing work, hospital stays, medical supplies etc., but with the support of our loving, super supportive families and friends it has made any obstacles we come across possible. Even with the challenges, Owen has been able to enjoy many, many things. We have just needed to adapt how things are done for him most times. Owen has had the pleasure of trying/participating in sledge hockey, wheelchair basketball, adaptive sailing, swimming, concerts and so much more. Although Owen does have challenges on a daily basis such as getting around his school, friends houses, parks, in and out of stores and more, he does it with a smile on his face and is always up to learning new ways to make things easier for himself,” explained Megan.
During the pandemic, Owen’s scoliosis progressed, which in turn prompted the need for further surgery. His parents had noticed slight changes in Owen’s ability to get around in his wheelchair, trouble breathing, fatigue, and pain in his lower back and arms.
“He started finding it hard to do things he loved – like hang with friends, sports, and dancing, singing to his favourite music. We noticed a change in the way he was positioned in his wheelchair, which prompted an appointment with his regular care team at the IWK (Izaak Walton Killam Hospital for Children in Halifax). At this appointment they discovered he had a progressive form of Scoliosis that was triggered by hormones (puberty). Owen’s spine at first diagnosis was at a 78-degree curve and quickly progressed to a 114-degree curve within months. With the progression, Owen was struggling with eating/nausea as his stomach was now compressed. His fatigue set in, he was unable to stay awake for long periods of time. Owen was unable to attend in-person classes at school and has reverted to online schooling. His scoliosis has impacted his social life, his schooling and his health,” said Megan.
The pandemic has often resulted in delayed surgeries, but Owen was able to re-schedule earlier than expected.
“We were actually thrilled to hear that his surgery would be happening in October as this was sooner than we were initially told. The first dates we were given were for early to late winter, so January or later. That was a scary thought to have to possibly wait six-plus months for a surgery that needed to happen ASAP. We were nervous to have to wait that long, so we started reaching out to other hospitals in hopes to find a surgeon that was able to do his surgery sooner. We did have a meeting with a wonderful doctor at the Shriners Hospital in Montreal who advocated for Owen and helped us secure the October date for Owen’s surgery at the IWK. We were told it would be best for Owen to stay close to home for his surgery, and we are so happy that was able to happen. Terrified was the other emotion we felt. We now had a date and knew that we had to navigate all that comes with this extensive surgery and soon. We were scared for his pain, and his healing, and the two major surgeries he would have to overcome,” admitted Megan.
The surgery, a spinal fusion, was a success, although another surgery will be required.
Owen before surgery.
“Owen’s first surgery, a spinal fusion, went better than expected. The doctor was able to do the surgery in record time with great results and expects that the first surgery’s success will lead to a very successful second surgery that will be completed on October 29th. The second surgery is to have rods placed to reinforce the straightening and structure of his spine to correct the curvature to hopefully somewhere around 40 degrees.”
This latest round of surgeries put addition stress on the family financially as Megan was just finishing maternity leave, and was thus unable to qualify for employment insurance to take time off to help Owen through his recovery.
“This was one of our many stresses as surgery was looming closer. Unfortunately, due to me claiming sick leave as I was taken off work a bit early due to pregnancy complications and then the 12 months of maternity leave, I was ineligible for any E.I. money to help us through the extra time I would have to take off of work to help Owen through the next few months of surgery and recovery. I was supposed to return to my job on Sept. 30th. Although my husband would still be working his full-time job during Owen’s surgery and recovery, unfortunately his income alone wouldn’t be enough to get us by,” explained Gale.
Owen after surgery.
The surgery went ahead as planned, and although there were some complications, Owen is on the road to recovery.
“His surgeries were very successful. However Owen has had many minor complications that he is still struggling with. He is in a lot of pain but still positive and happy he is on the other end of things,” said Megan.
It was for this reason that Megan’s sister created the GoFundMe page, so that Megan could take the time off to be there for her son.
“My sister had the idea to set up the GoFundMe to help with expenses while at the hospital and to help offset my lack of income during this time. My husband and I weren’t thrilled with the idea of taking financial help from people that were likely struggling themselves due to the pandemic, but my family insisted it was a good idea and was needed to relieve some of our stress,” shared Megan.
Anyone who would like to donate can do so online via: https://www.gofundme.com/f/owen-gale-surgery-relief-fund.
“If you are unable to help in a monetary way, saying a prayer for Owen’s speedy recovery and healing is just as important, and needed. We truly believe everyone’s prayers is what got him through his first surgery so well,” said Megan. “I would like to say a massive thank you to all of our family and friends, without all of your love and support. We wouldn’t have been able to get through this scary time so easily. We so appreciate the prayers, well wishes and overwhelming love from you all.”