All Babies need full time care, Some even more
By: Faith Valentine On:24 September 2021
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.We spent one week in intensive care.
"HE WAS ON A DOSE OF STEROIDS, 32 TIMES THE NORMAL DOSE. HAVE YOU EVER SEEN A BABY WITH ‘ROID RAGE?’. IT AIN’T PRETTY."
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.
I researched every opportunity I had and eventually stumbled across a Neuro-Developmental program in the UK called ‘Snowdrop for brain injured children. The Snowdrop program has helped him so much. It’s sad that nothing similar exists in Australia.
Every day, Max and I do an intense therapy routine, it fills 80% of our day. The days where we haven’t done much therapy, he regresses. I cannot put him in Childcare, because they do not have the resources to facilitate the hours of therapy he needs.
The brain damage has resulted in Max having cerebral palsy, vision problems & right sided hemiplegia. His right hand is always in a fist, it takes several massages/stretches
throughout the day, to stop it from permanently staying like that. Without the hard work we do with his right arm, it would become non-functional. Every morning, I wake knowing that I am responsible for 99% of his rehabilitation. The pressure often gets too much.
We have been rejected for Carer Payment twice, because Max doesn’t ‘tick enough boxes’. ‘Boxes’ which are applicable to an older child and not an infant. We need to wait until he is ‘more disabled’ before we become eligible.
So, I’m fighting another battle. I’m urging the Australian Government to review the legislation pertaining to Carer payments. Sadly, ours is not an isolated case. They say that ‘all babies need full time care’, I say ‘some babies need even more’.
No family, should be told to wait until their baby is ‘more disabled’ before the Government provides assistance. I love you Max, you inspire me every day with your stubborn determination. You are my hero.