Some days you wake up, blissfully unaware that your life is about to change forever. How could I have known, whilst drinking my morning coffee on June 2nd 2010, that my son would end up on life support later that day? He was 10 weeks old.
Max was just ‘a little bit off’ that morning. He was a bit grissly, a bit sleepy and a bit pale. Symptoms that were so darn subtle in a 10 week old and nothing catastrophic enough to indicate that a blood vessel in his brain had burst.
He had been eating well, sleeping well and he had no temperature. But, the niggles in my tummy grew stronger and stronger. Something wasn’t right.
I decided to take him to the Children’s Hospital. I even packed a big bag of supplies- bottles for him and sandwiches for me, thinking that we’d be sitting around the Emergency Department all day. By the time we arrived at the hospital, his body was limp and he was in respiratory arrest.
Later that day, we were told that he’d suffered a brain hemorrhage. His platelets were dangerously low and this had caused the bleed.
The next day, we were told he’d had a massive stroke that had damaged almost half the left side of his brain. On that day, he had seizures, lots of seizures. The seizures were causing his brain to swell dangerously, so he was placed in a medically induced coma. It was important to me that mine was the last voice he heard. So, I took a deep breath, read him his favorite story and sang incy wincy spider. There was a giant lump in my thoat and tears streaming down my cheeks, but somehow I got through.
We then spent 5 weeks on the Neuro ward, whist doctors frantically searched for a treatment, that would stop his body from attacking his platelets. In the space of 5 weeks, he had 94 platelet transfusions and the occasional blood transfusion.
He was on a dose of steroids, 32times the normal dose. Have you ever seen a baby with ‘roid rage?’. It ain’t pretty.
Finally, he started on a treatment that has only been used on a handful of babies worldwide. It was ‘experimental’ treatment in our case. We had no idea what to expect. Thankfully it worked and he didn’t grow a tail.
When we left the hospital, the hardest part of our journey began. We had virtually no supports, to teach us the rehabilitation strategies we desperately needed. The hospitals physiotherapy service, said they’d see him when he was ‘more disabled’. Early Childhood Intervention services had a 1-2 year waiting list and older children had priority.
I fought to get him a place in early intervention. I found a private physiotherapist who specializes in children with brain injuries. I worked far too many hours to fund his private physio.