Koen's Story
Koen's Story
In 2017, when Koen was just three weeks old, he woke from a day nap with an awful high pitched cry and wouldn’t settle, no matter what we tried to do. We rang a few places for advice, to be told we should pop in and have him checked at the local A&E. By the time we got to our nearest A&E, Koen had stopped crying and was started to settle a bit. The doctor and nurses were quick to assess him and found his heart rate, O2 stats and temperature were all normal.
One doctor decided to refer us up to Middlemore Hospital to have a final check over - just in case.
On our way up Koen started settling back down to sleep and making an odd, quiet, grunting sound. We arrived at Middlemore hospital, and Koen was placed on the check-in table in his capsule and his heart rate was taken. Koen was promptly whisked off the bench and rushed into the kids ward where doctors and nurses came flying from all corners.
Koen’s body was shutting down. His heart rate was over 200 and his temperature had spiked. The extremely quick-working medical staff rushed to identify what the cause was and after a number of tests and a lumbar puncture, meningitis was diagnosed, but it would be another 24 hours before we found out it was a late-onset group B strep bacterial strain.
Koen was intubated and taken through to the ICU were we stayed for a few hours. He was then stabilized by a team from Starship ready for the transfer up to PICU at Starship Hospital.
Koen stayed in PICU on ventilation for 9 days and his future continued to be unsure. He had multiple seizures and in time was able to be weaned off the ventilation machines.
Koen had multiple brain scans where it was found that the meningitis and sepsis had caused a significant brain injury.
Koen then lived in hospital between Starship and Middlemore for over 2 months, as did we. He was slowly weaned off all medications and given the all clear to return home with close monitoring from home nurses. There was also a big team of therapists and paediatricians behind him.
Koen underwent a range of tests during his first few months back at home and life turned to us trying to do the best we could for him. We researched neuroplasticity and the power of the brain, and started pouring as many therapies into Koen’s first few years of life as we could, often funding these privately (Physios, Occupational Therapists, Speech and Language Therapy).
Our world became about doing what we could to help new connections form in Koen’s brain.
Now 4 years into our journey, life is still about doing what we can for Koen. He has multiple diagnoses but we refuse to let these define Koen.
He now attends a very supportive and inclusive daycare who have early intervention trained teachers to support Koen’s goals.
He attends Speech Therapy and RDA (Riding for the Disabled Association) , and also has multiple therapists who visit him in daycare to support his development.
Recently Koen has had a small medical set back with seizures and this is something we are investigating with his neurology team.
Koen is now a cheeky little 4-year-old who always amazes us and his therapists with how far he has come after a pretty devastating list of possible outcomes.
