The SABA ROSE BUTTON FOUNDATION is a not-for-profit charity focussed on raising funds to help children who have special needs and their families.
Author: Lisa Shearon
The story of Saba Rose Button is one that’s been told many times. The little Perth girl who, when she was 11 months old, received a bad batch of the flu vaccine, and was left with an irreversible and catastrophic brain injury. And while that’s part of the story – yes – it’s just the beginning, the first chapter. The rest of the story is one of hope, kindness and life-affirming joy.
In 2010, when Saba became sick, that happy ending was simply inconceivable. Saba was given the flu vaccine one Monday afternoon in April; that night, as her temperature soared and she began experiencing seizures, she was rushed by ambulance to Princess Margaret Hospital.
The next morning, in a small, windowless room, doctors explained to Saba’s parents Kirsten and Mick that she had suffered multi-organ failure and global brain injury. They didn’t expect her to live. If she did survive, she might never walk or talk again.
“I remember a deep, guttural wailing sound came out of me,” Kirsten recalls. “I fell to the floor and said, ‘NO, NO, NO, we can’t lose our baby; they won’t take our baby.”
It was at this point that the life-defining strength of the Buttons began to shine through. They chose to only hear the words “she might survive”, and began their mighty fight – joined by a village of family and friends.
“We said that if Saba was prepared to fight, then so were we.
“I will never forget the ‘village’ that stayed at PMH with us when Saba first got sick,” Kirsten says. “When Saba first went into ICU there were about 20 people in the waiting corridor.
“Other friends made sandwiches and snacks for those who were waiting to see Saba, asking them to kiss her and pass on their love.
“The outpouring of messages and support was overwhelming, yet I still felt a strange grief that no one could understand.”
For the next three months, Saba and her village fought tirelessly. “Whilst Saba was on life support and fully intubated, my friends set up a roster of three to four people who would sit with her 24 hours a day (with us, although we tried to sneak away for naps, but I couldn’t be away from her).
“Everyone continually talked, sang, laughed and shared memories with Saba to ‘keep her with us’.”
After four days on life support, Saba began to breathe by herself, and Mick and Kirsten started alternating nights at PMH.
“My parents moved into our house, as did my brother’s family, just to help hold things together for our boy Cooper, who was only three years old when Saba became sick.
“One of us would come home from a long day at the hospital of sadness, exhausted after learning so much of how to care for Saba and from doing multiple ‘in-patient’ therapies, and we’d have the family waiting at home. The washing would be done, dinner would be on the table and Cooper would be ready for us.
“We could suck up the day and put on a smile for Coops and try to make things as normal as possible.”
The hardest time, Kirsten admits, was going to bed alone, with both Mick and Saba at the hospital. “I’d wake up in the morning and hope it was a dream, but instead start the process and roster all over again.”
After three months in hospital, Saba came home, although the family was continually in and out of PMH.
“Often close friends would sit with Saba to give us a break during the day and on occasion my Dad, my Aunty Sue, a close friend Mia, or my sister Shan would stay overnight to let us be together at home as a family.
“This was like Christmas and we would try and make this time together special by taking Cooper out for dinner or to the beach and pretend to be ‘carefree’ and ‘off guard’, although this was never the case.”
It was around this time that Kirsten began truly grieving: for the natural skills and talents Saba may have had, her first date, her career, even grandkids.
“Probably the hardest time was around four to five months after Saba’s injury. Everyone had gone back to their normal lives but everything had changed for us. I felt so alone, and this was when the ‘why me’ started to sneak in.
“These periods triggered an anxiety that I had never experienced before. All of a sudden I was in a very vulnerable space and that was new and incredibly scary for me.
“I smiled all the way through – that’s just what I do – and I also tried to focus on the positives of what I still had: my family, my love and hope.
“On a bad day I would often look at one of Saba’s toys from her birth and imagine my life had she passed during that crucial time; I would somehow find gratitude that she decided to stay with us.”
Of course, it wasn’t just Kirsten grieving for what she’d lost; her husband, Mick, was going through his own grieving process.
“Mick and I were incredibly lucky that one doctor – Dr Dan – gave us some great advice in ICU. He told us to ‘respect each other’s way of grieving’.
“This was great advice, as there were times that I would be a mess and Mick seemed to be coping fine, or vice versa. Instead of getting cross about this, we understood, and just supported and listened.”
Against the odds (which were stacked against them), not only did Mick and Kirsten’s marriage survive, it grew stronger.
“Apparently only 40% of marriages make it after such hardship, which makes me so proud of our strength, love and commitment. I know Mick has my back – physically and emotionally – and I have his.”
The Buttons’ story doesn’t end there. It doesn’t end with the arrival of nurse “St Clare”, who’s been with the family for seven years, working 40 hours a week to help care for Saba.
“We are so blessed to have St Clare, who shares the ridiculous load. Without Clare, I don’t believe we would be where we are today. Thank you to this special woman for committing to Saba and our family.”
It doesn’t end with the arrival of baby Bowie, little sister to Saba and Cooper. “It took us a long time to decide to have Bowie and it was the best thing we ever did,” Kirsten admits.
“We never felt in any way we were ‘replacing’ Saba, as each child has their own unique spirit, and anyway, we wouldn’t want to change Saba in any way now.
“Bowie has been the greatest little cherub to help us move forward, an active sibling for Cooper to play with and fight with – and is all over Saba. Their bond is out of this world.”
The Buttons’ story doesn’t end with their realisation that they can be just as joyful, thankful and as loud as the family next door.
“Yes, we have to deal with more than others, however we are an extremely happy family who love, care and want to hang out with each other.
“We still do all the ‘normal’ things – it may take longer to get out of the door with medications (just in case), nappies, change of clothes, suction machine, oxygen tank and mask, but we do it all discretely and it has become our new ‘normal’.”
The story doesn’t even end with the compensation received from the State Government (PMH) and CSL (the Melbourne drug manufacturer responsible for the vaccine) – although perhaps this marks the beginning of the next chapter. Prior to receiving compensation, the Buttons had established the Saba Rose Button Foundation in order to provide their daughter with essential therapy, which had proved hugely beneficial.
“We had seen so many positives results from Saba doing so much therapy, so we decided to keep the foundation running after Saba had received her compensation, so we could help other children.”
Having received compensation, Saba is completely blocked from her namesake foundation, which means that all funds go towards helping other children access intensive rehab, buy specialised equipment, and to pay for nurse care or respite in the home or for the family.
“We are currently assisting around 10 children and families with our RehabME program. We had been so well supported and wanted to give back.”
The Buttons – along with extended family and friends – work tirelessly and completely voluntarily for SRBF and RehabME, a task that can be all-consuming.
“When I see a child achieving amazing results or a family get some ‘quality’ of life back, it makes everything worthwhile,” Kirsten says.
“It has also helped us move forward, knowing we are establishing something special in Saba’s name.
“I swore we would create something positive out of what happened, and slowly but surely, we are.”
This family’s story is far from over, and is anything but a sob story. The Buttons don’t need our pity, sympathy or big sad doe eyes, which Kirsten inevitably receives on a daily basis. If anything, be envious of the Buttons.
Their lives are joyous. They smile, they give, they laugh, they share. Their family is strong and happy because of – not in spite of – Saba’s injury. You’d be hard-pressed to find a family with a closer, tighter bond. They have fun and find the joy wherever it hides.
“Obviously, we always live with the knowledge that things can change dramatically with Saba at any time, and that her life expectancy is much shorter than it would have been, however we pretend not to know this and continually push her and work her to be the best she can be and achieve all she can achieve.
“If you’re moving forward – even slowly – you are ‘moving’, and that’s a good thing!
Kirsten laughs as she considers the type of family the Buttons have become. “I’m sure we’re a loud family to live next door to, with people coming and going for therapies and our families and friends popping by.
“If you pop in, you’ll always hear us laughing and chatting. I absolutely love the family that we have become.”
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