Friday, 2 September 2011

10 weeks and 2 days

Max was only 10 weeks and 2 days old when I pulled up to the Emergency Department at the Children’s Hospital. That morning, he was a little bit sleepy, a little bit grumpy and a little bit  pale.  I’ve long mistrusted GP’s (but that’s another story) and I'm a paranoid first time mum so I decided to take him to the hospital to have him checked out. I figured that he probably needed some anti-biotics and prepared myself for a long day waiting around to be seen.  When I arrived at the Hospital, he was unconscious . Not long after that, he was on life support in ICU having suffered a massive stroke.

Max was only 10 weeks and 3 days old when his little body had seizures over and over again. At first,  nobody thought it was serious. That afternoon however, an EEG revealed that he was fitting almost continuously. He was having seizures even when we couldn't see them. Late in the afternoon, an MRI showed that his brain had swollen dangerously as a result. Max was placed in a medically induced coma early that evening to protect his brain from further damage. It was important to me that mine was the last voice he heard before his big sleep so I read to him "Where the Wild Things Are" because that's about a little boy called Max. I sang his favourite song 'Incy Wincy Spider'. It took everything I had not to cry.

Max was only 10 weeks and 4 days old when we were told that he had extensive damage to the left side of his brain.   I didn't hear much of what the neurologist said after that. All I could think was "Why him?", "Why us?". No one knew how this would affect him. Our life would become a waiting game.
Max was 10 weeks and 5 days old when we realised that the right side of his body was paralysed. I noticed when one of the doctors was checking his reflexes that they were almost absent on his right side. It was one of many times I would scream obsenities inside my head, whilst outwardly trying to maintain my composure.
Max was 10 weeks and 6 days old when he started to wake up from the coma. Waking up from a coma is nothing like it is on television. His eyes opened one painstaking millimetre at a time but even when they were fully open, they were glassy and spaced out.

Max was 11 weeks and 1 day old when he started breathing by himself andwas taken off life support. Finally, I was able to him in my arms again.  He screamed and screamed, turning himself purple in the process. Not exactly how I imagined he would react but this was 'normal' according to our nurse that day. Her theory was that when babies did that, they were in fact, telling their mummy about everything they've had to endure.

Max's stroke was caused by severe thrombocytopenia (low platelets) and it would take another month before the hematologists were able to find a treatment that worked.  His immune system relentlessly attacked his platelets and he had transfusions twice a day during that time.  His platelets always sat at a dangerously low level which meant he was always at risk of having another bleed.  I coped by throwing everything I had into doing physiotherapy with him (ok and I may have cracked it once or twice with his doctors)

We spent a total of 5 weeks in the Neuroscience Ward. It was one of the most character building experiences of my life. Have you ever shared a room with 3 other children and their parents for 5 weeks? 24 hours a day, 7 days a week. I could write a book with the stories I have.

Max was one week shy of turning 4 months old when we were finally able to take him home.

Max is now 5 months old. He can do everything that other babies his age can do but he has some paralysis in his right arm. The week that my baby spent in ICU, should have been the hardest part of his illness but it wasn't. The hardest thing, is the long journey we now find ourselves on and the physiotherapy that we do with him day after day, though we often go weeks without seeing improvement. We have a 1-2 year wait for our local early intervention program and there are virtually no other programs for kids like Max. So when Max is asleep, I research EVERYTHING I can find about stroke rehabilitation. It would be a waste of my time, to focus on the negatives when I have so much to be thankful for.

I have been blessed to have an amazing network of family and friends by my side. Without them, I am certain that I would've 'lost the plot' at least a dozen times by now.  I have surprised myself by always managing to find the strength to keep going, even on the days when I've felt completely broken. Inwardly, my heart cries for my son and the challenges he will have to face in life. Outwardly, I smile and sing his favourite songs hoping that he doesn't see the sadness in my eyes.

I hope that one day, Max will regain most of the strength in his right side and nothing will get in my way of helping him achieve that goal. I hope that I can instill in him the confidence that he can still achieve anything he sets his mind to. Have you seen the movie 'Finding Nemo?'. I'm going to use that movie as an analogy when he is a bit older. Even though one of Nemo's fins is small and malformed, he still manages to achieve great things.  More then anything though, I just want him to be happy, it's the only thing that truly matters.
This is Max today waiting for his lunch. He is now 5 months old

Max is my silver lining. He is my rainbow. He is my hero.


  1. Max is gorgeous. I clicked over and had to comment. I am sorry Max had to endure this challenge, but he is fortunate to have a mum with amazing tenacity and strength of heart to be inspired to see beyond his present circumstances. Much love to you Faith.

  2. Well written, Faith. And even though I have been following along for a while now, it still brought tears to my eyes. The research you are doing is SO valuable; keep up the great work. My thoughts are with you and Max.

  3. Just came across your blog. You are doing an amazing job and Max is absolutely adorable. xx

  4. Thank you guys, I really value all the positive comments that people make. It feels like there is a whole team behind us and it helps me so much x

  5. Always interested in your posts Faith & you've done a great job capturing all that you've endured over the recent months in a really well written recap. Much love to you & Max. He is looking so very cute in his highchair! xx

  6. Thank you so much for sharing your story. Good luck, Max and Mom. You are both amazing!

  7. so beautiful and touches on so many feelings so many of us have...i believe God sends us these special children because he knew we'd love them so much and do everything we ever could for them...thank you for sharing!

  8. You absolutely SHOULD write a book about your experiences, Faith. You are a beautiful writer, and Max's story is... well, this author and grandmother of a child who also suffers from ITP does not have words to describe the power of your story. Let me know if there is ever anything I can do to help you in that endeavor. Not only is it a story that deserves to be told, but gaining some income from it will help you to help Max.