Stories of affected children and families

Dylan Sheppard

Dylan SheppardDylan Darren, our third son was born on the 4th of May 2010. Throughout the pregnancy he was closely monitored by the Fetal Medicine Unit. We were reassured for the whole of the pregnancy that the brain was perfect.

After Dylan was born I had noticed in the days following that he had similar features to Cody, including muscle stiffness and feeding difficulty. I tried to convince myself that there is no way that Dylan could have the same condition as Cody. But deep in my heart I knew something was wrong with him. He was admitted to the Neonatal Intensive Care Unit, where they monitored and carried out various tests on him. They conducted an MRI of Dylan's brain and compared the results to Cody's previous MRI scans.

“I tried to convince myself that there is no way that Dylan could have the same condition as Cody”

At the time it felt like we were doing it all again (reliving the hospital nightmare and playing the waiting game). Approximately a week after Dylan was born we were advised by the medical profession that Cody was diagnosed incorrectly, and that both Cody and Dylan had Pontocerebellar Hypoplasia Type 2. I put my hands in my head, I couldn't look at Dylan and I couldn't comprehend any of what they had just told me. I felt sick and numb. We couldn't comprehend how this could happen again. We were advised and reassured by the medical profession that it was unlikely to ever happen again, and that it was one in a million chances of it reoccurring. The days and weeks to come were heart breaking, depressing and sad. We did research on the condition, and were glad to see that there was at least a fare bit of information available. Dylan was expected to live only a short life, meet no milestones, have breathing problems of respiratory failure and so the list goes on.

Once we got Dylan home we started to bond with him. When we got home in the first couple of months there were many times when we didn't want to go on with our journey. We couldn't find the strength to keep going. It was the strength and support from family and friends that have got us to where we are today.

Dylan had whooping cough less then a year after he was born. It was at this time that his GP introduced us to ACT Palliative Care Society, who were at our door within hours of our GP approaching them. They have helped us to give Dylan the best quality of life he can have. They have helped us to provide a plan for pain management and symptom's relief. With the help of them we can give Dylan the necessary medication at home to keep him comfortable. They have also helped us in the preparation for death and the grieving process. We have put in place an end of life plan which is supported by Dylan's GP, Pediatrician and ACT Palliative Care Society. This time around it is so different; it is so nice to know we can call on ACT Palliative Care Society anytime of the day or night. We feel so at ease knowing that ACT Palliative Care Society is apart of our journey, I only wish we had known about the service when Cody was with us.

Dylan and brother Ben, Darren and Sonia

At the time of writing this story, our special little Dylan is 15 months old. Our goal for him is to keep him comfortable and give him lots of love. We feel this time around we are so much stronger as a couple and as a family. Darren and I agreed that we did not want to pursue physio and speech therapy for Dylan. For Dylan we have agreed that the goal is quality of life, not quantity. My work has been very supportive and has enabled me to have time off to spend quality time with Dylan. We have cut out all of the unnecessary medical appointments, excluding appointments with his Pediatrician (Professor Reynolds). This Pediatrician has been very supportive and we contact him on an as needs basis.

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