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2008 - Max Yorke Vallender
(16.07.2006 - 31.08.2006)
Max's SMA Story
After a dream pregnancy, Max Yorke Vallender was born on July 16, 2006. Sam and I, big brother Colin, and our families and friends were so happy to finally have him here.
Everything seemed fine until later that night when the pediatrician arrived and said one of the nurses thought that Max was a bit floppy, especially on his right side. We were worried, but told it usually isn't a big deal, and would resolve itself.
An appointment was scheduled at McMaster Children's Hospital to meet with a neurologist the next day. We were very hopeful after meeting with the doctor and being told that there was nothing wrong with his brain, and that the floppiness would resolve on its own. This would all change once we met with neuromuscular doctor the following week.
After the neuromuscular doctor performed an initial examination of Max, he sent us for blood tests to determine if Max had a genetic disorder called Spinal Muscular Atrophy. We asked him what that meant, and what could we expect if the test was positive. He told us that if the test came back positive, the life expectancy of an infant with Type 1 SMA was 2 years. We were crushed.
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We returned home after the blood test, anxious, devastated, worried, and deeply in love with our baby boy. How could our beautiful baby boy not be with us forever?
The following week, we noticed that Max's breathing was quite laboured. We were admitted to McMaster Children's Hospital and spent the next 3 days in the pediatric unit. Max's breathing and oxygen levels were observed, but although his breathing was laboured, he was ok. Max ate very well, and always did best when he slept with his mommy. We were sent home with instructions on positioning and physiotherapy to ensure comfort for Max.
The following week and a half, we were home with our new baby boy. The time was some of the best memories we have of Max, but also filled with anxiety of the SMA testing. Colin was incredibly wonderful and gentle with Max, often asking our visitors "Do you want to pet my baby brother?" We all took naps together, with Max in the basinet next to the bed, and Colin climbing into our bed, it was a nice time with all of my boys.
At three weeks of age, Max smiled for the first time. We were later told that babies with SMA are so happy and smile often.
After a week and a half at home, Max was again admitted to McMaster in the NICU for breathing difficulties. We had been in the NICU for 3 days when we were given the diagnosis. Max had Type 1 SMA. Over the next few days we made plans for bringing Max home, and we made decisions that no one should ever have to make for their child.
We were also moved out of the bunk room, and moved to the Ronald McDonald House just a 4 minute walk from the hospital. We spent as much time as we could at the hospital, with grandparents visiting us at the hospital and picking Colin up for various activities and to bring him to visit mommy and Max.
One of the plans for bringing Max home included having a G-tube inserted to help with feeding once he came home. Max's G-tube surgery was scheduled for Tuesday, August 29th. He did so well in the surgery. We anticipated that we might be able to take him home in a few weeks.
The next morning when we arrived at the hospital, we were informed that Max's right lung had collapsed. They were trying to inflate it using various methods. I was not allowed to nurse him, and whenever I was present, he cried such a tiny little cry because he was hungry and knew I was there. We all thought it would be best to let Max rest for the day rather than irritate him and get him exhausted.
When we returned to the hospital in the evening, Max's condition had not changed. Our parents came to the hospital to be with us. We all stayed at the hospital until 2:30am.
Sam and I returned the next morning at 7am. We were told that Max's condition had not improved and that we would need to make a decision for the next step. We had already made the decision that we wouldn't allow Max to suffer, and that turning off the machines would be best for him.
We were moved into a room in the NICU where Max could receive care, and our families could also be with us. Up until that time, Max was allowed only 2 visitors at a time, and one of the visitors had to be Sam or myself. Colin came to the hospital to see Max and say goodbye. Max's grandparents, Grandma and Grandpa, and Nana and Grandad all spent the day with Max. Max's god parents Richard and Katey also came to the hospital. When the minister came to say a prayer for Max, and it was the only time that day that Max opened his eyes and looked directly at me.
Around 4:15 on August 31, Max peacefully left this world to join other loved ones in heaven. He was surrounded by his family and friends and knew very much how loved he was.
We are so grateful that we had Max for 6 short weeks, and that he touched so many people in his short life. We know that Max had a purpose in this world that will outlive his time here. SMA took our son, brother, grandson, nephew, friend from us, but we will always have his spirit, his love and his smile to remember.
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