After a normal pregnancy, our world was completely turned upside down 36 hours after our son Mitchell was born.
We were urgently transferred to Waikato Hospital NICU, as Mitchell was having blue episodes, or breathing apnoea’s, and twitching that soon developed into more noticeable and longer seizures. The medical team on-deck began the difficult process of trying to stabilise and control the situation. The tests, monitors, alarms, and the drugs were scary! This stuff only happened on TV, or so we thought.
After what felt like an eternity, an MRI scan showed Mitchell was missing part of the brain called the corpus callosum which does the job of synchronising the messages between the left and right hemispheres of the brain.
A new way of life
We were in and out of Waikato Hospital or the Hilton (as it affectionately became known) for Mitchell’s first three to nine months with uncontrollable seizures. It was frightening for us as parents and hard for our 5-year-old son Cameron to comprehend what was wrong with his infant brother.
Everything we were used to in family life changed, and for people who were busy professionals and were used to looking forward to things, life dramatically became a day-by-day existence with Mitchell’s needs taking priority over everything. We weren’t just battling the medical issues, but also the emotional issues and stresses of severe anxiety and sleep deprivation.
During Mitchell’s first two years, he missed developmental milestones like sitting, crawling and talking and he was fed via nasal gastric tube and then a Mic-key button through his tummy. We managed his seizures with a 5-times a day medication regime, while he also suffered aspirations, which meant admissions for an increasing spate of chest infections becoming Pneumonia
True Colours support
True Colours were there for us every step of the way. From the moment we met Cynthia, she recognised all our emotions, and made it OK for us to kind of “grieve” for what was not going to be a normal child, and she carefully and calmly enabled us to process what we needed and to begin to think about how to care for our special Mitchell. True Colours were amazing at coordinating with all the other medical teams and agencies; all in order so we could care for Mitchell at home to the best of our ability.
They also provided support for our oldest son Cameron. While as parents we had to obviously grapple with Mitchell’s needs, we also needed to support Cameron. Stephen’s gentle and caring sessions created an environment for Cameron to open-up and provide insight into how he was really feeling. That was invaluable to help us because Cameron could have had every reason to resent his brother – but the opposite was fortunately true.
A new diagnosis
Not long after Mitchell’s second birthday, an MRI showed us were was a dramatic lack of brain development that was likely caused by an extremely rare genetic or metabolic condition. That was the first time we found out that Mitchell had a life limiting neuro-degenerative disorder – every parent’s worst nightmare. We now had a ticking clock that we could not change, control, or fix.
Once again True Colours came to the fore and helped us through a truly horrible time. They helped us accept this new fate and process that we might not have Mitchell for a long time, AND we had to ensure we would try to make the most of every day and moment with him.
Inevitably life carried on and over the next 3 years Mitchell’s conditions amplified and degraded further. We continued to have frequent hospital admissions ranging in length between 4 days to two weeks, and one of us was there every day and night without fail. We had 44 admissions in total over a 5-year period. It took a huge toll on all of us including Cameron.
Because he didn’t learn to walk, Mitchell developed an increasingly severe scoliosis of the spine. His leg muscles developed dystonia, and he had hip dislocations. Mitchell’s vision didn’t properly develop, and of course he didn’t learn to speak or communicate. It was incredibly hard to see him go that way, but we did get occasional smiles on happy times and they were worth a million dollars.
Life without Mitchell
Sadly in August 2015 after yet another pneumonia, Mitchell’s battle with being a prisoner in his own body came to an end. I can’t tell you in words how that moment felt, but once again Cynthia was right there in those final days. She helped prepare us for the inevitable, and she enabled us to be in those precious final moments. And afterwards, through careful planning, all the practical arrangements were taken care of so we could be with Cameron and our family.
True Colours support didn’t end with Mitchell’s passing. They continued to keep in touch and offer support for us and Cameron who has to deal with the lifelong impacts of losing his brother and becoming an only child. Cameron had some dark times afterwards, and Stephen helped him understand what he was going through, that it’s OK to feel the pain, but that he’s going to be OK.
Thanks to the Law family for sharing their story with us