This is a story I dedicate to my son Jason Leigh Stewart (“J”),
who cannot write it himself – so who better than his mom!
who cannot write it himself – so who better than his mom!
by Corinda Smallman-Gallant, Prince Edward Island
July 7, 1981, was one of the most exciting days in my life – I gave birth to a healthy baby boy and handsome to boot, I thought. My son, Jason Leigh Stewart.
In the first year and a half, Jason suffered some febrile convulsions, throat, ear and other childhood infections but otherwise appeared healthy and active. But one day his dad and I brought him to Chaleur Regional Hospital, only to be wrongly accused of child abuse. Of course, we denied that. Then, a new word entered our vocabulary: hemophilia. We had never heard this word and were afraid knowing nothing about the disease.
The doctor explained the inheritance of hemophilia. You see, I was adopted and no mention or memory of hemophilia ever came up in my family. We were whisked off to Dalhousie University Medical Centre and also Moncton City Hospital for tests. The response: “Jason is a moderately mild hemophiliac.” Our hearts sank but we set about to learn, comfort and go on with life.
All seemed to go well or at least not too bad until 1983, when within five months, Jason had an upper lip laceration, swelling in both knees and pain in his right leg. By this time, we had started regular visits to Dr. Sheldon Rubin (one of the greatest doctors in our lives). He didn’t seem overly concerned at this time — just explained that these were common types of bleeds with hemophilia.
Then it all changed in May 1984. J was hospitalized at Chaleur Regional Hospital when he had to be transferred to Moncton City Hospital with a possible subdural hematoma (bleed in the brain). He had emergency surgery and remained in critical condition (comatose and on ventilator) for almost a week; then he opened his eyes and began to respond to verbal stimuli. It was unclear whether he would suffer brain damage at this point.
Dr. Rubin recommended that J start factor VIII replacement therapy to secure hemostasis. The New Brunswick Extra Mural Nursing Staff of the Chaleur Region were so helpful, making home visits to give him factor injections directly into his veins.
We brought our boy home towards the end of June. J seemed on the road to recovery but he had to learn to walk, talk and potty train again.
July 12, 1984, his dad and I were at work, we received a call from his caregiver saying J did not seem well and was very drowsy and unresponsive. Off we went to the hospital only to be transferred to Moncton City Hospital; once again, he had an intracranial hemorrhage. Another operation... more blood transfusions, more factor treatment and a higher risk of brain damage. Jason made it through this surgery but with consequences.
And so began a new stage in our journey with our son... now re-diagnosed as having severe hemophilia, with mental delays placing him at various age levels on his psychological assessment and noticeably so in physical day-to-day activities. Our hearts were broken and we were scared! J once again began a regime of infusions every other day with the help of the great Extra Mural staff.
At one point, Jason had a plastic plate placed in his head where the skull did not fuse together properly. His body rejected it as foreign and yet another surgery was necessary. For a few years following, his dad and I were asked if we would like to have another plate placed but something told us not to; thus Jason has a soft spot in his skull like that of a newborn baby. When he goes to his favorite spot “Camp Gencheff” and plays with the other challenged individuals there, he wears a helmet for protection.
In 1986, J had his first port-a-cath inserted. His dad and I were trained to give infusions. At first I felt so bad, like I was hurting my son, but I just kept in mind that I was actually keeping him healthy and that the convenience was very helpful in planning our daily lives. Since then, Jason has had three more – most recently in 1999. Unfortunately infections and other complications set in
At one point, we received a letter stating some factor VIII product during the time J received therapy had been infected with Creutzfeld-Jacob disease. We thought, what more could happen, but luckily he wasn’t affected. Thank God for another miracle!
We weren’t so lucky with the hepatitis C virus – which my poor little angel now has. I often think what more does this wonderful, genuine, loving and caring little guy have to go through. Yes, the first few years of Jason’s life were frantic – in and out of the hospital more than we liked and complications that changed all our lives forever. His dad and I ended our marriage; Jason and I moved back to P.E.I. in 1996 and now live in O’Leary. He has had some knee bleeds but otherwise the “Dude” as I call him is doing quite well. Just before he graduated from Three Oaks Senior High School, Summerside, P.E.I., in 2000, J and his hero “Gampie Foster” were out golfing (a sport I might say J excels in) when a bleed started in one of his knees thus putting him in a wheelchair for his graduation. But he was still happy – nothing much bothers my Dude. After graduating, he was enrolled for a while in a day program on a part-time basis with the Community Inclusions program in our area. He enjoys his days listening to music, watching game shows (Deal or No Deal and Wheel of Fortune being two of his faves), playing video games, and visiting his Nana Orell. J also attends Camp Gencheff one weekend a month from October to May and then five days in the summer. Obtaining the services of medical staff to infuse him during the summer camp has proven tough and up ’til last year, I had to be available to do the infusions. With the cooperation of hemophilia nurse Dorine Belliveau, Queen Elizabeth Hospital and Nana Orell, we were able to have him infused at the hospital and I am able to take some much needed time.
As if it’s not enough that J has severe hemophilia, hepatitis C and is mentally challenged – he is also epileptic. Some of the drugs he must take to prevent seizures do further damage to his liver. It seems like a “no win” situation, doesn’t it?! J’s challenges make it quite difficult to obtain respite services, but the main reason people hesitate is because of the hepatitis and hemophilia and their lack of knowledge. I can give all the information I can possibly provide but still hesitation prevails. Jason also experiences many spells of vomiting and fatigue, which in itself seem to scare away prospective caregivers.
In 2009, I made a “bucket list” for myself. One of the things on my bucket list was to take my son to Disney World in Orlando, Florida. With much preparation – the packaging of his treatments to get through Customs, letters from physicians and Dorine Belliveau – and the blessings of Dr. Sheldon Rubin, Dr. Peter Gorman and Dr. Gil Grimes, we were able to make the flight and were on our way. The look of excitement in his eyes as we approached The Magic Kingdom brought tears to my eyes.
Mamie Orell, J and Corinda.
There is so much more I could tell you about J but I must end this story thanking all those who are so patient, understanding, loving and caring toward both of us as we try to live one day at a time. Since hemophilia is also known as the “Royal Disease”, I must also say I believe I have a royal soldier who has won many battles and continues to do so. I pray for continued victories for Jason and all others with hemophilia across the world every day!
- March 2011