I never ever thought I would be a mother to a stroke survivor, I didn’t even know children could have strokes until our warrior Hannah fell gravely ill with gastro.
On the night of May 2, 2016 Hannah our 6-year-old daughter appeared at my bedside just after midnight to say she had a headache, sore tummy and diarrhea. Within half an hour she was violently ill and this continued for the next 10 hours. Gastro had been making the rounds in our household and at school, so I didn’t think anything of it. Her temperature rose and I administered Panadol, but due to severe vomiting she couldn’t keep any fluids down.
The next morning, I made a bed up on the couch in the front living room for her complete with water, hydrolyte, and a bucket. I covered her up and got her comfy and continued to open all the windows, it was a sunny day in Perth and I wanted to air the house out and get rid of the germs. I then went to lay down as I was still recovering from my bout of sickness the day before. In the meantime, my mother–in–law called to check on us both.
I awoke suddenly at 4:45 pm to the sound of my eldest daughter alerting Nannie (my mother–in–law) that Hannah was shaking her left leg and arm in the air with such force that she fell off the couch to the floor face first. Both my mother–in–law and I raced to the front living room to find Hannah face down. We rolled her onto her left side frantically calling her name—her breathing was shallow, there was a blue tinge around her mouth and lips, her eyes rolled back in her head and she was unresponsive. My mother–in–law lifted her into her arms and ran towards the front door as we tried to decide whether to take her to the doctor or ring for an ambulance.
My mother in law rang triple 0 and I put my other children to bed. I was worried about them witnessing the treatment Hannah would receive from the paramedics. The ambulance arrived swiftly and asked for background information on Hannah, did her vitals and offered her glucose. As Hannah and my mother–in–law settled in the back of the ambulance I blew her a kiss, I still thought she was just severely dehydrated from gastro. I then notified my husband of the situation who was away at work.
A few hours later, I received a call from the emergency room doctor. He told me that Hannah was unresponsive, having continuous seizures, she had been placed on a ventilator and they were preparing her to be transferred to Princess Margaret Children’s Hospital. He advised that he couldn’t make a diagnosis at this stage, but that she was extremely sick. I was shocked by his concern thinking she may have just had severe gastro and asked if they were sure they had the right child. I then spoke to my mother–in–law who confirmed it was definitely Hannah. The doctor advised me to contact my husband and have him and any other close family members make their way to PMH to see her and say their goodbyes.
I rang my husband and tried to convey the message the doctor had given me as calmly as I could and told him he needed to get home ASAP.
When I saw Hannah, I could not get over how tiny and frail she looked on the huge hospital bed. She had a ventilator, cannulas, tubes and wires everywhere, and was seizing down the left side of her body, and her complexion was grey. I was afraid to touch her in case I accidentally pulled out a tube, I told her Mummy was here and that she was strong, and that I didn’t know what was wrong but that she was in a safe place and to fight as hard as she could. I told her Mummy & Daddy both loved her very much.
The next morning as we sat at Hannah’s beside we were greeted by a team of 12 doctors, specialists, nurses, and a social worker. That morning they planned to wean her off the 4 different anti-seizure meds to wake her from the induced coma to see what she would do. It was during this as her tiny body went into continuous seizures that my husband arrived. I remember hearing his voice and his bags hit the floor. I felt a sense of relief that I wasn’t alone on this horrific journey. Hannah’s tiny body continued thrashing about, unresponsive to her name and making sounds neither of us had ever heard before. I stood fixed by her bedside squeezing her hand trying to desperately plead for a sign that she was going to be her typical self.
On day 3 in the PICU Hannah had a CT scan which showed swelling on the right side of her brain pushing on the left side. Her team ordered an MRI and were discussing putting in a stent to remove the fluid. The initial MRI showed 3 small bleeds on the right side of Hannah’s brain. A week later she still wasn’t improving and a second round of tests were organised. It was on day 8, that our neuro consultant sat with us at Hannah’s bedside with tears in his eyes and confirmed that our Hannah had suffered a right front parietal ischaemic stroke of unknown causes on May 3, 2016 and was in fact fighting for her life. I remember being read a list of side effects and asking him ‘How does a perfectly healthy 6-year-old have a stroke!?’.
Hannah spent 12 days in the PICU in an induced coma on life support. On day 9 she threw her right hand up in protest as her nurse attempted to do oral care and suction her mouth. Tim & I had tears in our eyes, our little girl was fighting, and it gave us hope that we could fight too. 4 days later when they woke her from her induced coma, she stopped seizing and tried to raise her right arm to wipe a hair off her face. She recognized Tim and me, although she was confused as to where she was, but she was awake.
Later that night once off the ventilator, she was discharged to a regular ward to begin her next challenge. I was now her full-time carer and her voice. I buzzed the nursing staff when her meds were late or when she was crying in pain. We faced many challenges during that time and she was checked hourly. She also continued to have finger pricks, urine checks, nappy changes, nasal tube feeds and sponge baths. The second week we were on the ward where we were introduced to a team of therapists (Physio, Occupational Therapist, Speech and a social worker). We were shown different chairs for her sit in, wheelchairs, shower chairs, commodes, hoists and she was fitted for an AFO for her foot, one to wear during the day and one to wear overnight as well as a second skin arm splint. Hannah and I spent the next month in the hospital learning how to roll over, pull herself up into a sitting position, how to crawl, how to stand up, how to walk again, how to swallow again, drink from a straw to a cup, to feed herself, how to say simple words, and then how to string sentences together.
She was discharged from hospital on June 7, 2016 and began PMH’s Intensive Rehabilitation Program under a multi-disciplinary rehabilitation team to improve her left upper and lower limb function, mobility and to address her cognitive and psychosocial needs following her acquired brain injury due to stroke. Since Hannah’s ABI (Acquired Brain Injury) she has been diagnosed with left sided hemiplegia, sensory impairment throughout her upper left arm, left sided hemianopia (visual field deficit), impairment with her attention control, executive function, awareness difficulties, fatigue and epilepsy with uncontrolled seizure activity.
Nearly 18 months on and Hannah is back at mainstream school full time in year 2 with her peers. She attends weekly Physio and Social group therapy sessions, fortnightly occupational therapy, speech therapy and psychology sessions. Our biggest issue is that Hannah looks ‘normal’ other than her second skin arm splint which she wears 5 days a week. It is hard when she fatigues after 3 to 4 hours and melts down. It has affected our other 3 children in different ways as well as my husband and myself. We slowly creep out of our ‘bubble’ to sadly retreat back, as it’s just easier most days but very lonely for all of us on other days. We are still trying to find the ‘balance’ as to how much intervention and therapy is too much or not enough. When to just breathe and let Hannah be a typical 8-year-old girl. Despite everything she has endured since her stroke, she is a very strong, determined, happy little girl who loves to laugh, spend time with her family, friends and dog Georgie. We truly believe that without our faith in God she wouldn’t be where she is today, and despite the odds stacked against her we believe our warrior is destined to do great things! Go Hannah!
On the night of May 2, 2016 Hannah our 6-year-old daughter appeared at my bedside just after midnight to say she had a headache, sore tummy and diarrhea. Within half an hour she was violently ill and this continued for the next 10 hours. Gastro had been making the rounds in our household and at school, so I didn’t think anything of it. Her temperature rose and I administered Panadol, but due to severe vomiting she couldn’t keep any fluids down.
The next morning, I made a bed up on the couch in the front living room for her complete with water, hydrolyte, and a bucket. I covered her up and got her comfy and continued to open all the windows, it was a sunny day in Perth and I wanted to air the house out and get rid of the germs. I then went to lay down as I was still recovering from my bout of sickness the day before. In the meantime, my mother–in–law called to check on us both.
I awoke suddenly at 4:45 pm to the sound of my eldest daughter alerting Nannie (my mother–in–law) that Hannah was shaking her left leg and arm in the air with such force that she fell off the couch to the floor face first. Both my mother–in–law and I raced to the front living room to find Hannah face down. We rolled her onto her left side frantically calling her name—her breathing was shallow, there was a blue tinge around her mouth and lips, her eyes rolled back in her head and she was unresponsive. My mother–in–law lifted her into her arms and ran towards the front door as we tried to decide whether to take her to the doctor or ring for an ambulance.
My mother in law rang triple 0 and I put my other children to bed. I was worried about them witnessing the treatment Hannah would receive from the paramedics. The ambulance arrived swiftly and asked for background information on Hannah, did her vitals and offered her glucose. As Hannah and my mother–in–law settled in the back of the ambulance I blew her a kiss, I still thought she was just severely dehydrated from gastro. I then notified my husband of the situation who was away at work.
A few hours later, I received a call from the emergency room doctor. He told me that Hannah was unresponsive, having continuous seizures, she had been placed on a ventilator and they were preparing her to be transferred to Princess Margaret Children’s Hospital. He advised that he couldn’t make a diagnosis at this stage, but that she was extremely sick. I was shocked by his concern thinking she may have just had severe gastro and asked if they were sure they had the right child. I then spoke to my mother–in–law who confirmed it was definitely Hannah. The doctor advised me to contact my husband and have him and any other close family members make their way to PMH to see her and say their goodbyes.
I rang my husband and tried to convey the message the doctor had given me as calmly as I could and told him he needed to get home ASAP.
When I saw Hannah, I could not get over how tiny and frail she looked on the huge hospital bed. She had a ventilator, cannulas, tubes and wires everywhere, and was seizing down the left side of her body, and her complexion was grey. I was afraid to touch her in case I accidentally pulled out a tube, I told her Mummy was here and that she was strong, and that I didn’t know what was wrong but that she was in a safe place and to fight as hard as she could. I told her Mummy & Daddy both loved her very much.
The next morning as we sat at Hannah’s beside we were greeted by a team of 12 doctors, specialists, nurses, and a social worker. That morning they planned to wean her off the 4 different anti-seizure meds to wake her from the induced coma to see what she would do. It was during this as her tiny body went into continuous seizures that my husband arrived. I remember hearing his voice and his bags hit the floor. I felt a sense of relief that I wasn’t alone on this horrific journey. Hannah’s tiny body continued thrashing about, unresponsive to her name and making sounds neither of us had ever heard before. I stood fixed by her bedside squeezing her hand trying to desperately plead for a sign that she was going to be her typical self.
On day 3 in the PICU Hannah had a CT scan which showed swelling on the right side of her brain pushing on the left side. Her team ordered an MRI and were discussing putting in a stent to remove the fluid. The initial MRI showed 3 small bleeds on the right side of Hannah’s brain. A week later she still wasn’t improving and a second round of tests were organised. It was on day 8, that our neuro consultant sat with us at Hannah’s bedside with tears in his eyes and confirmed that our Hannah had suffered a right front parietal ischaemic stroke of unknown causes on May 3, 2016 and was in fact fighting for her life. I remember being read a list of side effects and asking him ‘How does a perfectly healthy 6-year-old have a stroke!?’.
Hannah spent 12 days in the PICU in an induced coma on life support. On day 9 she threw her right hand up in protest as her nurse attempted to do oral care and suction her mouth. Tim & I had tears in our eyes, our little girl was fighting, and it gave us hope that we could fight too. 4 days later when they woke her from her induced coma, she stopped seizing and tried to raise her right arm to wipe a hair off her face. She recognized Tim and me, although she was confused as to where she was, but she was awake.
Later that night once off the ventilator, she was discharged to a regular ward to begin her next challenge. I was now her full-time carer and her voice. I buzzed the nursing staff when her meds were late or when she was crying in pain. We faced many challenges during that time and she was checked hourly. She also continued to have finger pricks, urine checks, nappy changes, nasal tube feeds and sponge baths. The second week we were on the ward where we were introduced to a team of therapists (Physio, Occupational Therapist, Speech and a social worker). We were shown different chairs for her sit in, wheelchairs, shower chairs, commodes, hoists and she was fitted for an AFO for her foot, one to wear during the day and one to wear overnight as well as a second skin arm splint. Hannah and I spent the next month in the hospital learning how to roll over, pull herself up into a sitting position, how to crawl, how to stand up, how to walk again, how to swallow again, drink from a straw to a cup, to feed herself, how to say simple words, and then how to string sentences together.
She was discharged from hospital on June 7, 2016 and began PMH’s Intensive Rehabilitation Program under a multi-disciplinary rehabilitation team to improve her left upper and lower limb function, mobility and to address her cognitive and psychosocial needs following her acquired brain injury due to stroke. Since Hannah’s ABI (Acquired Brain Injury) she has been diagnosed with left sided hemiplegia, sensory impairment throughout her upper left arm, left sided hemianopia (visual field deficit), impairment with her attention control, executive function, awareness difficulties, fatigue and epilepsy with uncontrolled seizure activity.
Nearly 18 months on and Hannah is back at mainstream school full time in year 2 with her peers. She attends weekly Physio and Social group therapy sessions, fortnightly occupational therapy, speech therapy and psychology sessions. Our biggest issue is that Hannah looks ‘normal’ other than her second skin arm splint which she wears 5 days a week. It is hard when she fatigues after 3 to 4 hours and melts down. It has affected our other 3 children in different ways as well as my husband and myself. We slowly creep out of our ‘bubble’ to sadly retreat back, as it’s just easier most days but very lonely for all of us on other days. We are still trying to find the ‘balance’ as to how much intervention and therapy is too much or not enough. When to just breathe and let Hannah be a typical 8-year-old girl. Despite everything she has endured since her stroke, she is a very strong, determined, happy little girl who loves to laugh, spend time with her family, friends and dog Georgie. We truly believe that without our faith in God she wouldn’t be where she is today, and despite the odds stacked against her we believe our warrior is destined to do great things! Go Hannah!
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