JOURNEY AS TOLD BY MOTHER KERRYN
During routine baby checkups at 8 weeks old, Henry’s GP had noticed that his head circumference had rapid growth since his previous checkup. From a short time after birth, Henry’s eyes seemed to look a little alarmed, which progressed into sunsetting eyes. He was closely monitored by our GP for head growth over the next few weeks and then sent for an ultrasound of his fontanelle which showed extra fluid in his brain. He was sent to our local hospital for an MRI the following day, which revealed he had an arachnoid cyst that looked to be partially blocking the flow of his CSF. The doctor explained that Henry had hydrocephalus and that he would be sent to Brisbane QCH the following morning to consult with neurosurgeons.
It was in Brisbane that the neurosurgeons explained that Henry’s cyst looked to have been the result of a small brain bleed that likely occurred during his birth. We were told that this is quite common but unfortunately it was not in a great spot in his brain. Henry was 11 weeks old when he had his first neurosurgery to fenestrate (open) the cyst in an attempt to restore normal flow of his CSF. The surgery went well, but 3 weeks later his head circumference was still growing and a follow up MRI revealed that his cyst had re-sealed so he was sent back to Brisbane for another surgery. Surgery #2 was to repeat the same surgery and it was revealed that there was a second membrane within the cyst that the neurosurgeon had not seen during the first surgery, so it was also fenestrated. His post-op MRI looked amazing and the flow of CSF was well and truly restored and we finally felt a sense of relief.
We were on our way home to Mackay, when we noticed Henry’s sunsetting eyes had returned and his head circumference had grown 3cm since his discharge just 6 days earlier. He had no other symptoms but we decided to take him straight to the hospital when we arrived home. An MRI on arrival showed that Henry’s CSF was continuing to build even though the cyst remained open, we were in total disbelief. He was sent straight back to Brisbane for the insertion of his very first VP shunt at 16 weeks of age.
Fast forward almost 12 months later, Henry’s peritoneal catheter migrated into his testicle and became tangled inside. Once again he was sent to QCH in Brisbane where they performed a shunt hernia repair. We have everything crossed that his journey is smoother sailing from here.
This little boy is so tough and full of resilience, he inspires me every day and I am ever so grateful I get to be his mum. Henry is now 2 years old, full of cheek and mischief and is loved beyond measure!
