Hannah a Little Stroke Warrior
On the night of May 2, 2016 our 6-year-old daughter, Hannah, appeared at my bedside just after midnight to say her head was hurting, she had a sore tummy and diarrhoea.
Within half an hour she was violently ill, and was vomiting and experiencing dizziness, blurry vision, fever and chills. This continued for the next 10 hours. But gastro was making the rounds at home and at school, so we assumed she had picked it up too.
The next day Hannah seemed to be more settled, so I made her up a bed in our living room and opened the windows for some fresh air. I checked on her all day. She was only managing small sips of water or Hydralyte but seemed comfy and was sleeping soundly.
At 4:45 pm our eldest daughter, Abbigail, noticed that Hannah kept putting her left leg and arm in the air and shaking it. I knew something was badly wrong and called triple zero (000) immediately.
Whilst on the phone with 000 Hannah continued to shake down her left side. Her lips were pulled back and she was very blue around the mouth, her breathing was very shallow, and her eyes were rolled back in her head. We were all terrified and the minutes it took for the ambulance to come felt like an eternity.
Hannah was rushed to the nearest hospital and my mother-in-law went with her in the ambulance. I thought she was dehydrated from being so violently ill, and that she would be given IV fluids and sent home. But nearly four hours later the ED doctor rang, and she said my little girl had been intubated, that her little body was continuously seizing.
I immediately thought “you have the wrong child” and asked to speak with my mother-in-law. Unfortunately, she confirmed Hannah was declining rapidly and the team were prepping her to be transported to Princess Margaret Children's Hospital.
I rang my husband who was working some seven hours away in Kambala and he immediately jumped in his car to come home. I still think - how did he keep himself together for the drive back.
Meanwhile I went into shock. How does a healthy little girl go from showing symptoms of dehydration to her life being on the line so quickly?
Hannah spent 12 days in the PICU on life support, as her medical team completed test upon test, including CT scans, MRIs, ECGs, bloods, swabs, and put her on a two-week course of broad spectrum antibiotics and antibiotics for Meningococcal disease. She was on regular Panadol, a myriad of pain medications and three types of anti-seizure medications administered intravenously. Hannah had tubes all over her body to keep her alive.
On day eight, after she had had repeated CT scans and MRIs, it was determined that she had suffered a right frontal parietal ischaemic stroke of unknown cause.
Shit, shit, shit.
Strokes are terrible; however, not knowing the cause made it even scarier. I just wanted to make her better. The team was doing everything they could, but like any parent, you just need answers.
After 12 days, Hannah was moved to the ward and weaned off her pain relief medications. She started intensive rehabilitation, doing daily physio, occupational therapy, speech therapy and clinical psychology.
The stroke took everything from Hannah that she had learned in her six years of life. She was like a baby, having to learn to do everything, and I mean everything, from scratch. Hannah had to relearn to roll over, sit, walk, jump, swallow, speak, chew, and spit. She was fitted with an AFO (ankle foot orthosis), a night splint for her left foot and ankle, and a left arm ‘Second Skin’ arm splint. She had a manual wheelchair, and toilet surround, and we were linked with ‘Visibility’ to help her to compensate for her left peripheral vision loss in both eyes.
After hospital, Hannah attended outpatient intensive rehabilitation, called ‘I Rehab’, four days a week for 18 months, and would attend school on Fridays for an hour, visiting her year 1 classroom.
But just six months after her stroke, Hannah was found unconscious in the playground by her friends. This happened a few times, but with each episode, by the time her friends got her to the sick bay, she had recovered. Then in November 2016 she had her first myoclonic seizure at home and by the following April she was experiencing multiple seizures every day.
We kept Hannah in school, so life was as normal as possible for her, but in 2019 we finally had to take her out of school. It was a very hard decision because we did not want Hannah to lose any more of her childhood.
Our only option now was to have Hannah tested for further brain surgery to try and stop the seizures. We researched everything about operations and treatment and pushed very hard for it for Hannah.
Finally, earlier this year she underwent a six-hour procedure at PCH. Hannah had a right functional hemispherectomy with a complete corpus callosum disconnect, and a section of her frontal lobe was removed.
Hannah spent another month in hospital, doing intensive rehabilitation with physio, occupational therapy, speech therapy and clinical psychological counselling. Then she did a further eight weeks of outpatient rehab, which ended early because of COVID-19.
Even though we are bitterly disappointed Hannah’s rehab has been interrupted, we finally feel our little girl is back. We see our funny, kind, caring, helpful, determined child. We are proud of Hannah's ‘can do’ attitude; she is so determined to get better and gives everything a go no matter how daunting the task at hand is.
She is a real example to us and others of what the human spirit can achieve. Hannah has had to restart her life three times, and she’s not even out of primary school.
I, as Hannah’s mum, and a parent of a Little Stroke Warrior, am advocating for an improvement in our health system’s capability to recognise childhood stroke. It kills me that her strokes were not picked up earlier. Our daughter's initial CT scans and MRI picked up three separate bleeds on day three of being on life support. But it was not until eight days later, when she was getting worse, that the repeat CT scan and MRI confirmed a catastrophic stroke, which by then had wiped out her entire right hemisphere.
We are concerned that other people may have to go through what we have, so we are sharing our family’s story to put childhood stroke in the spotlight, and we won’t stop until it is!
Lastly, we know that recovery from stroke is lifelong. But no matter how bad a day we may have had, we rise the next day in a positive manner. With Hannah's recovery we will never set limits or say, “no you can't”.
We owe it to Hannah to support her to live fully and reach her potential – which I might add is humongous!
XX – from Team Hannah!
We posed a final question to Hannah’s folks:
Q) What are the top 4 pieces of advice would you tell other parents?
1. Be kind to yourself!
2. Do not let others; Doctors, therapists, family, or friends set limits on your child.
3. Never say “They can't!” Let your child have a go...it may not happen the first time or may not be easier but with practice...it will eventually get better or you will find a way for them to adapt.
4. Do not be afraid to grieve the child you once had or lost but continue to believe in them, in yourself, in your partner.