MEET KAIDEN MOOD

JOURNEY AS TOLD BY MOTHER AMY

Kaiden was my first child, I was 17 when I fell pregnant with him. I gave birth to Kaiden at 18 and was instantly in love with him. The midwife was doing all of his checks and said his soft spot on his head was very large! But was normal.

My nan kept saying she had been having dreams that something wasn’t right, and she prayed for a fix for him. Months went by and Kaiden wasn’t hitting his milestones. He couldn’t crawl, he couldn’t hold a bottle and never walked.

I fell pregnant again when Kaiden was 3 months old and had the home midwife come around when I had my daughter. She saw the size of Kaiden’s head and noticed how limited he was and made me a doctors appointment. I went to the doctors and they said Kaiden’s head was on the 95th percentile but still normal! I demanded a referral to the peadiatrician/ specialist.

We finally got into to see the pead. We were sitting in the waiting room with Kaiden and his sister and the doctor walked out and called out Kaiden’s name, I turn the double pram around and he looked at Kaiden and said I hope your here for your sons head. My gut sunk! My mum was with us and the doctor walked off into his room and when we got to the room he was already on the phone to Newcastle John hunter organising scans and surgery!

Kaiden had his first VP shunt placed when he was 14 months old, his sister was only 7 weeks old! We cried and screamed and cried some more! Kaiden up to the age of 5 years old had 5 brain surgeries! The shunts just kept failing. Kaiden is almost 12 now and his last shunt revision was when he was five. The last revision was done because I noticed Kaiden blinking a lot! He had a blocked shunt and the fluid build up behind his eyes was causing his optical nerve to swell and cause pain and discomfort hence the blinking.

Kaiden now has to wear glasses and be regularly checked for pressure behind his eyes but he is now going great!

MEET CHARLOTTE JOYCE

JOURNEY AS TOLD BY MOTHER STACY

In the early hours of 10th April 2019, our sweet 11 month old Charlotte Joyce was rushed to Brisbane from Rockhampton via RFDS with suspected Salmonella Meningitis. She was placed in the NICU at Queensland Children’s Hospital where she was prepped for an MRI for the next day. We received a phone call to come back to the NICU were we were confronted with seeing our little baby girl still anaesthetised and had several Senior Medical Professions looking at her MRI results. It showed that she had two large brain cysts and Hydrocephalus.

We were informed that Charlotte was to go back in to surgery to insert an external ventricular device as well as fenestrate the cysts. Our world was shattered but we didn’t realise that this would be the start of a very long ordeal. It was confirmed that Charlotte had indeed contracted Salmonella Meningitis (from gecko poo) and that she was up against a 3% chance of survival rate. We spent 3 1/2 months in Hospital where she endured 11 Brain surgeries to reinsert drains, fenestrate the cysts several times and then eventually insert a VP Shunt in to her Ventricles.

We were finally allowed home to Rockhampton only to last four days and Charlotte was rushed back to Brisbane via RFDS again to NICU where it was found that the cysts had filled up with fluid again. She was rushed to surgery to put a external drain directly in to the cysts to drain some fluid and had a meeting the next day with the Neurosurgeon team to discuss our next step. It was decided to go have open brain surgery where they took a 3cm circular piece of her skull off and tried to put some deep slices in to the cysts to open them up. This was successful and we were on our way home for recovery in a matter of weeks.

Charlotte had a routine MRI 6 weeks later only to find that once again the cysts were filling up with fluid. It was decided that a VP Shunt was needed to be inserted in the cysts themselves to control the fluid levels. Charlotte spent her first birthday and first Easter in hospital. All up Charlotte has had 34 General Anaesthetics, 5 external brain drains, 1 open brain surgery and 13 MRIs. We were told that Charlotte is one of a small percentage in Australia that have 2 seperate VP Shunts for 2 separate issues. Charlotte was later diagnosed with cerebral palsy as a result of all the surgeries but that hasn’t stopped her living life to the fullest.

Charlotte has just turned four and you would never know anything has happened to her apart from her scars on her belly and her two VP Shunts. She is our little Hydro Warrior!

The Hydrocephalus Support Association is run by a committee, who are elected into their positions each year at the Annual General Meeting. Everyone who works in the Hydrocephalus Support Association is a volunteer. Most of the committee members work full or part time in paid employment, and they fit in their commitments to the HSA in addition to work and family life.