“Things were turning around. We were preparing to bring Malcolm home for the first time. I went into the hospital that morning feeling hopeful. But when I got there, Malcolm coded. It had happened many times before; the team was always able to bring him back. This time was different. He wasn’t himself anymore. He needed more and more medication to get through an hour; more support to breathe – we couldn’t even hold him. We knew there wasn’t anything else we could do, he couldn’t live on his own. It was an incredibly hard decision to let him go.
Malcolm had a rare genetic neuromuscular disease called X-linked myotubular myopathy. He would get mucus plugs in his lungs and not be able to cough them up. His breathing would stop. His heart would stop. I found out I was a carrier when he was born. I had no idea. Only boys are affected and only 50% live past 18 months. My first son, Kayleb, only lived for five days. Malcolm was six months old when he passed away.
We always knew how serious Malcolm’s condition was from the moment he was diagnosed. Our Pediatrician, Dr. Blayney, came in every day and encouraged me to be Malcolm’s mom instead of his nurse. Every single doctor, nurse, and team and staff member worked tirelessly to give us more time with him. They did everything they could to make Malcolm’s short life exceptional. The weekend before Malcolm passed away, he got to go outside for the first time with our family. It was a wonderful moment we wouldn’t have had without the team at The Moncton Hospital. Even though Malcolm’s gone, we still stay in touch. They’ve become like family to me.” – Samantha
Right now, you can ensure everyone in our community receives the best care possible by giving to the Friends of The Moncton Hospital Foundation.
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