The Story Too Important Not to Repeat -

  DEEP IMPACT - SABA BUTTON, THE GIRL WHO IS NEVER ALONE Property of The Sunday Times. First published in STM magazine April 3, 2010 The flu vaccine crisis that gripped the country last year left one innocent Perth toddler with debilitating brain damage. Now, 12 months on, Saba Button’s parents break their silence and tell how things went horribly wrong. Billy Rule reports. At the main entrance of Princess Margaret Hospital, there are five children frozen in time. Cast in bronze and hauntingly dressed in crinkled Victorian outfits, the statues watch silently as visitors pass by. One still boy lugs a teddy bear, another child sleeps in an iron cot, a third toddler drags his home made wagon, while an older girl with flowing hair tries to run away. All of them are lifelike, yet cursed never to move again. The last child near the northern sliding door is a small girl kneeling respectfully. Look at her sad eyes long enough and you can almost hear her whisper: “Please Mum, take me home to the life I once knew.’’ This time last year Mick Button would be hard up knowing where to park his car at PMH. He’d only ever been there once and that was a false alarm. He and his family were a picture of health and he’d been blessed with a lucky life riding waves all over the world. After leaving school in the northern suburbs, he set up Santosha surfboards, before becoming instrumental in bringing the Rusty Surfwear label to Australia. As the brand boomed in the late ’90s, Mick had plenty of opportunities to travel the world searching for that ultimate swell. "Good waves and good weather somewhere I could surf in my boardies," he quips with an infectious laugh. For years he bobbed through life much like he did as he sat silhouetted against the horizon waiting for that next big set  - if he missed an opportunity, another one would come along sooner or later. No dramas. It was an unbreakable bond. He was happy being Mick Button. Sun, surf, sand, saltwater, single. Then nine years ago a happy girl living in Scarborough took Mick’s mind off the waves for a while. Kirsten Carty’s sandy hair and sparkling eyes soon had Mick sliding off his board and slipping into a more serious relationship. The polite, well spoken primary school teacher taught Mick there was more to life then a south-westerly swell. In 2005 they were married on Rottnest Island by Monsignor O’Shea at the little Catholic Church of the Holy Trinity. With 180 family and friends squeezing out of the side doors, they exchanged vows as the sun shone on their lives ahead. Two years later a son, Cooper, was born and on April 26, 2009, Kirst and Mick welcomed a daughter, Saba, into their happy house. "She looked so much like her brother," Kirst recalls. "A nice easy birth. Just a 3½ hour labour. When she was born I looked at her and put her on my chest. My daughter. "And when she came home she was such a good little girl. Happy, healthy and she made it so easy for us. She slept twice a day and would hardly stir at night apart from when I picked her up for a breastfeed. We were very lucky." Mick thought he’d been living the dream as he grew up chasing the endless summers, but it didn’t come close to how content he felt as a new father and family man, sitting in the shallows splashing with his kids. As young surfers ran past him on their way to the waves, Mick smiled in the sparkle of the shore wash with Cooper "born on my birthday, best birthday present ever" and Saba "she’s daddy’s girl, you know". But he still loved a wave and when an invitation to a friend’s Bali wedding arrived in March last year the couple thought it would be a good chance for an overseas family holiday by the beach with the kids. Around the same time Kirst also received another letter in the mail, a warning from the WA Department of Health about the upcoming influenza season. "We believed at the time in immunisation and we saw the flu vaccination as part of that," she says. "The letter said flu vaccination was the right thing to do to protect our children." The 2010 seasonal influenza strain would also protect against the human swine flu, which had emerged in 2009. These details were all explained in the letter. What wasn’t in the document was that one of the vaccines, CSL’s Fluvax, had shown side effects during its clinical trials. Almost 300 children from six months to nine years old were tested by CSL. Adverse reactions included high irritability, rhinitis, fever and temperatures above 37.5C. More than a fifth of them reported vomiting and diarrhoea. All these reactions were higher than previous years. Vomiting and diarrhoea had never been noted before. As the Buttons enjoyed WA’s warm autumn weather by the beach, the 2010 vaccination program was officially launched on Friday, March 19. That weekend the State Government began an advertising campaign encouraging parents to vaccinate their children. And so they did. But within days there were problems. On Wednesday, March 31, in the tiny Wheatbelt town of Wickepin, nine children were vaccinated and six of them suffered reactions. One child was taken to Narrogin Hospital. Wickepin Health Service reported the issue to the Wheatbelt public health nurse who, the next day, emailed the State Government’s Communicable Disease Control Directorate (CDCD) with her concerns. She was told not to worry. A week later the senior nurse from the Central Immunisation Clinic in Rheola St, West Perth, contacted the CDCD. She reported "getting phone calls from parents regarding adverse reactions to the free flu vaccine. High fever and vomiting approximately five hours post vaccination". This was different to previous years when the Rheola St clinic had very few "adverse events following immunisation". The next day, on Friday, April 9, tragedy struck in Queensland. Two year old twin Ashley Epapara died a day after having the flu vaccination. Over the next week SA and Victorian authorities reported cases of adverse vaccine reactions to the Therapeutic Goods Authority (TGA) - Australia’s regulatory agency for medical drugs and devices - and WA’s CDCD. Meanwhile, spot fires continued to ignite locally. On Monday, April 12, nurses in PMH’s Emergency Department reported six suspected reactions, including seizures, to the seasonal vaccine. Panicked parents in Geraldton called the CDCD after their children had febrile reactions to the vaccine and the Rheola St clinic again contacted the CDCD, reporting three more phone calls from worried parents with sick children, post Fluvax. The CDCD contacted the TGA. Over the next five days those spot fires formed a fire front. By Saturday, April 17, there had been 101 presentations of babies, toddlers and children to PMH’s ED suffering adverse reactions. Despite the chaotic scenes at PMH and worried parents reporting their concerns to state health departments, no official communication had filtered into the suburbs, so Perth GPs were still administering the vaccine. And at 12.30pm on Monday, April 19, protective mum Kirst Button held 11 month old Saba as her GP’s nurse gave the healthy toddler 0.25ml of CSL’s Fluvax in her left arm. "In the car on the way home, Saba cried and seemed upset, which was unusual for her," Kirst says. "But once we got home she was happy. She went to bed at 2pm and slept for two hours, which was normal. It was a relaxed afternoon. She ate all her dinner, we gave her a light shower and I dressed her for bed before heading out for pilates." Mick gave Saba a bottle at 6pm and soon his angel was asleep. About 7.30pm he heard a moaning sound crackle through the baby monitor so he went upstairs to check. "She was lying on her stomach, so I put her on her side just in case she was uncomfortable," Mick says. "Then I went back downstairs and five minutes later she was moaning again. This time I thought I’d pick her up and give her a cuddle. That’s when I knew there was a problem." Saba slumped in his arms like a doll and her little body was boiling. Mick called his wife, who had popped in to see her parents on the way home from pilates. When her daughter’s moans made it through the speaker phone, Kirst broke down. "I was hysterical," she says. She had never heard Saba sound so helpless. Mick called an ambulance "I just knew something was wrong" while Kirst hurried home. When she arrived, she scooped her limp baby girl into her arms. "Sabi, Sabi, Mamma’s here, Mamma’s here." No response. She took her temperature _ 40.2C. It should be 36.5C. Five minutes later the ambulance arrived and after some routine checks Saba was on her way to PMH. Kirst sat in the back with Saba _-who now had diarrhoea - on her chest. And there was this strange sound that wouldn’t stop: "Beep, beep, beep, beep, beep, beep." Mick looked around from the passenger seat." "What the hell’s that?" he quizzed. "It’s her heart rate," one ambulance officer said, gravely. Almost 238 beats a minute - three times the 70-80 beats of a healthy 11 month old. A decision was made to alert PMH and when they arrived there was a team of doctors and nurses waiting. Mick and Kirst heard someone say, "Oh, it’s another Fluvax baby", which was confusing because they knew nothing about other immunisation problems. Saba was given fluids, Panadol and placed in an Emergency Department cubicle where her symptoms changed for the worse. She vomited twice and was twitching and restless. Kirst also noted Saba wouldn’t respond to her and was going cross-eyed. "Something’s not right," she thought, so she rang for a nurse. After two hours it was decided Saba should stay overnight and she was transferred to Ward 9A. "Saba was still shaking and twitching," says Kirst. "And in the ward she started doing a slow rhythmic movement with both her arms and legs. The arms flicked up and the legs rolled out. The movements were all in unison." A doctor arrived and suspected these were unusual seizures. Over the next three hours Saba was given two different doses of seizure medication. At about 1.30am she started to settle, so Mick went home to relieve Kirst’s parents who were looking after Cooper. Kirst stayed beside her baby girl hoping she was healing. Even though she was totally fixated on her daughter, Kirst was aware of how alone she felt. The ward was quiet and dark. She had always thought she would do anything to protect Saba, yet the most she could do right now was just be with her as she slept - whispered promises and prayers from a mother to her child in a ward of woe. Within the hour, the silence was broken as Saba started having more intense seizures. And this time she was struggling to breathe. The doctor and nurses decided Saba needed to be in the Intensive Care Unit. "I was scared as things began to get worse," Kirst recalls. "I rang Mick and told him to come back." At 4.30am Saba was transferred to ICU. This seemed unbelievable how had it come to this? Less than 10 hours ago their cheeky-eyed daughter was laughing with her brother. Now she was hooked up to machines to keep her alive. She was intubated and hooked up to a ventilator to help her breathe. A naso-gastric tube to prevent vomiting and a catheter to empty her bladder were inserted. Saba was given a variety of drugs to control the seizures. Blood tests revealed damage to her liver, kidneys and bone marrow and an MRI and CAT scan later showed the enormity of her brain damage. The following morning, Wednesday, April 21, Mick and Kirst’s world slipped off its axis as they were given a deathly diagnosis. From the moment they had stepped into the ambulance with Saba, they felt safe. They were going to hospital, they would be with doctors who could look after their precious daughter. The public perception of doctors is they will calm you, cure you, heal you. But there are times when the 3531 full time doctors in WA have to deliver bad news as well. And on that Wednesday morning, paediatric neurologist, Dr Simon Williams, had to take on a job for Judas. He had been on call for both neurology and the Acquired Brain Injury Team when Saba arrived at PMH. After examining her, he feared the worst. In a small windowless room near ICU, Dr Williams and another doctor and two nurses explained that Saba 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. It was at that moment Kirst cracked. After two days of silent, private hope, she finally broke down and fell to the floor howling, as Mick and her brother, Adam, tried to comfort her. But soon her sobs of surrender turned to cries of disbelief. "No, no, no, NO! They won’t take my baby. They won’t take her!" Even though Mick and Kirst were both distraught, the words "if she does survive" gave them a glimmer of hope. They were determined to do everything possible to keep Saba alive. "These people in ICU are amazing," Mick says. "I can’t say enough good things about them, especially Dr Williams. They deal with radical stuff every day and part of what they do is to prepare you for things you may not want to face. But they didn’t realise we are fighters and so is Saba." And their fragile baby would need to punch above her weight because no matter how much belief Mick and Kirst had in her, only Saba could keep herself alive. "When they sat us down in that room, Saba was on full life support because the level of drugs she needed to control the seizures were smashing her kidneys and liver," Mick explains. "When we said we were up for the fight they said, ‘OK, there are three things that are worrying us her kidneys, her liver and her breathing. We can help her kidneys and liver with medication but we can’t make her breathe. She has to do it herself’." So "Operation Save Saba" began. A decision was made that Saba was never to be left alone in hospital. Never. Ever. Kirst and Mick alternated night shifts so the other could spend time with Cooper at home, and there was a queue of family and friends who offered to jump in and stay by her bedside. "A roster was set up by a friend for people to sit with Saba overnight," recalls Kirst. "Everyone agreed. Saba was never to be left alone. In the first few days, all the girls sitting with her would sing, talk or read to try to stimulate her and bring her back to us. "We felt so loved and supported by family and friends throughout this really lonely, sad, empty, weird time of disbelief." Soon the walls around her bed were covered in messages of hope and visitors had to wait at reception to see her, such were the numbers who wanted to sing, read or just talk to the silent little girl. Saba was not only surrounded by love but also by specialists. As well as her doctors in PMH, Mick and Kirst were given clearance from the hospital to invite alternative therapists into the ICU. "The kids have visited a naturopath and chiropractor since they were born," Kirst says. "So from the third day in ICU, Saba’s acupuncturist, chiropractor and other healers came in and they began working with her. We truly believe this lifted Saba." On Friday, April 23, Saba showed some strength. She was able to take a few soft breaths in tandem with the breathing machine. It may not have been time to celebrate but three days later there was an excuse to feel good. It was Saba’s first birthday. "We decorated her rooms with balloons," Kirst recalls. "One of my friends made cupcakes and everyone came in to give her a kiss. We also had a little party with friends at PMH it was a bit of a weird feeling, but we just wanted to celebrate that Saba was still with us. "My sister, Shannon, asked everyone to make a cardboard heart with a message or a prayer that we could put up all over her room in ICU. This ended up being amazing. People brought all sorts of things to put close to her and it ended up looking like a shrine." Saba spent 11 days in ICU and almost eight weeks in hospital. She has been back to PMH 11 times in the past year because she continues to suffer seizures and respiratory problems. Three times Mick and Kirst have been forced to call an ambulance to make sure she gets to hospital in time. The longest stretch she has been home is seven weeks. Saba’s brain injury is from prolonged seizures. She can’t eat by mouth at the moment and it’s not certain whether she will have much movement or be able to talk again. Despite their ordeal, Mick and Kirst continually emphasise theirs is not a sob story but rather a long slow journey. "We are very positive people," says Mick. "So we just try to surround Saba with lots of love and positive energy. She feeds off that, I can see it when I’m with her. The two things your kids need are love and security. If you give them that, then they’ll do the rest. We’re just trying to do that." Just after 5.30pm, on Thursday, April 22 _ three days after Saba was rushed to hospital _ then WA Health Minister Kim Hames announced the suspension of the flu vaccination program for children under five. Next day the Federal Government extended the halt across Australia. An independent inquiry was ordered by the State Government last May. In August, former WA chief medical officer Bryant Stokes handed down his report that found "serious deficiency" in reporting processes and slow responses by both state and federal authorities. Recommendations were made, but not all of them have been followed through. The TGA dismissed the Stokes report. Its own review failed to identify why there was a spike in febrile convulsions and why the adverse reactions occurred. CSL, the manufacturer of Fluvax, released a statement last month, which said: "Despite extensive scientific investigations involving Australia’s TGA, the US Food and Drug Administration and other international experts, CSL is yet to establish the root cause of the association between its 2010 Fluvax vaccine and the unexpected increase in febrile reactions. Investigations are continuing." The Fluvax brand is no longer being used in Australia for vaccinating children under five. Last week, Saba was back in hospital again. Ward 9a, Room 12. Lying next to her on a single pull-out plastic mattress was her dad. Whenever she’s in PMH, Mick Button does the night shift and then heads off to work in the morning, for Kirst to take over. Mick reckons he gets some sleep but it’s doubtful. For almost 10 minutes, unbeknown to Mick, I look through the door at father and vacant-eyed daughter. If she dribbles he gets up and wipes her face. If she slips down the bed, he gets up and makes her comfortable again. Even if she’s lying peacefully, he still gets up and nuzzles her face, kisses her cheeks and whispers in her ear, to remind her that she’s NEVER alone. Never, ever. And she never will be.