The Strength of Sullivan

Sullivan entered the world in all his glory on the 4th of July 2018. His birth was less than perfect, ending in a code red C-section due to foetal distress but he had arrived and his Apgar scores were 7 & 8, not bad!

Sully 1

Sullivan was taken for a short stay in the NICU due to some slight respiratory issues, but was able to stay with us the very next morning. Safe to say, we were utterly smitten with him. His big brown eyes were a reflection of my own, while the rest of him was all his Dad. Sullivan had no issues feeding and despite the traumatic birth we were released, baby in tow, a short 2 days later.

Sullivan quickly settled in at home, and we quickly forgot what life was like without him.

Sully 2When Sullivan was around three months old, I remember remarking to my Mum while watching him play under a play gym – “he’s going to be a left hander”. I had noticed that day that he was much more dominant with his left hand, always swatting and batting at toys with his left, while his right would stay mostly in a fist. A twinge of panic washed over me, not because I knew about Paediatric Stroke at that point, but mostly because I’m a bit of a worrier.

I decided I would keep an eye on his right hand, it wasn’t like he wasn’t moving it, there was just a clear preference. Days went by and I couldn’t shake the worried feeling, so I did what most people would never recommend, I took to Dr Google, and down the rabbit hole I went. I read numerous stories about children favouring one hand, only to wake up one day and magically start using the other overnight. I was sure this was what was going to happen with Sullivan, however, I also read stories about children suffering strokes.

 

Wait, what? Children, babies… have Strokes?

A week later when we saw there was no change, we decided that we should take Sully to the GP and raise our concerns. My GP assured me that Sullivan may just be left handed, and that he presented as a well-engaged, healthy, thriving little human, sending me on my way. I’d be lying if I told you that my concerns subsided.

Over the next few weeks I would visit 4 more doctors, to one, actually saying the words “I think my son has had a stroke”. At each one of those 4 visits, my concerns were dismissed. And so, as it does, life went on.  Sully continued to grow and learn new things, but his right hand continued to stay in a fist.

At around 6 months old, while we were visiting family I noticed Sullivan make a weird movement. Kind of like a startle reflex babies have when they are newborn, except his eyes darted to the left. That familiar sense of panic washed over me again.

We didn’t see that movement for another two weeks, but when we did, I knew in that moment something was very wrong. As subtle as they were, we had an overwhelming urge to rush Sullivan to the Emergency Department of our local hospital. We were met with a relaxed vibe and were initially told by the Emergency Doctor that Sullivan was “playing around”.

We knew our baby, and he was not playing. He seemed distressed during the episodes which had quickly gone from lasting for a few seconds to lasting up to 5 minutes. The Emergency Doctor sent us home. Thinking back now, at the time we thought that would be the hardest night of our lives, but that was to come.

We made the decision the next day, after presenting at our local hospital again only to be sent home, to drive 2.5 hours to the closest Children’s hospital.


This was the best decision we have ever made. Hands Down.

 

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Within 1 hour of presenting in emergency we were greeted by a whole Neurologist team who took our concerns extremely seriously. I mentioned Sullivan’s left hand preference and fumbled a sentence containing the word stroke and the Head neurologist assured me he would complete an MRI urgently for Sullivan. He explained that children under the age of 18 months should never have a hand preference.

While we waited for the MRI, Sullivan underwent an EEG test and was diagnosed with a rare type of seizure called Infantile Spasms. A catastrophic syndrome which if left untreated can cause irreversible brain damage, we then learnt that the scarring left from a Paediatric Stroke can sometimes cause this.

Sully 4

We knew deep down what the MRI would reveal, we just wanted to know so we could get our gorgeous boy the medical support he needed!

Sullivan was put under anaesthetic and taken from us so they could complete the MRI. We nervously went back to our little hospital room and awaited a call telling us he was in recovery.

After collecting a very groggy Sullivan from recovery we were greeted by the entire neurology team who asked us to follow them into a private room.

“Look, I want you to know that Sullivan is ok, but you’re about to be shocked by what you’re about to see” our Neurologist explained.

He then explained that Sullivan had survived a stroke.

Most likely between 30 weeks gestation and 6 weeks of age. Subsequently he was diagnosed with Right Side Hemiplegic Cerebral Palsy. A common outcome in children who survived a stroke. Our world changed that afternoon, irrevocably.

I remember feeling an odd sense of relief, we’d been advocating for our son for almost 4 months, knocking on doors, trying to find answers and we finally had them. Among that feeling of relief was devastation, confusion and the list goes on.

That night, I walked in on my partner Josh having a word with Sullivan. “You’re going to change the world” I heard Josh say.

That night after joining a few online Facebook support groups, a friendly face reached out to me. She explained there was a support group for Little Stroke Warriors. Kylie spoke to me that night until the wee hours. Telling me her own, as well as her daughters’ story, assuring me Sullivan will surprise us and that he is the same baby he was before his diagnosis.

We started on medication to control the seizures and began intensive therapy. We started working towards our own little goals, researching and connecting along the way.

We are still early on in our journey. Sullivan is about to turn 10 months but everyone who meets him is blown away by his resilience, his gentle heart and soul, his determination and cheeky grin. He has met each new milestone with such resolve and willingness.

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We are so lucky we get to see Sullivan’s face every morning, to experience his firsts when they come. Lucky to be changed to the core by his diagnosis. Lucky that Life will never be the same, Lucky that we will never be more appreciative of the small things.

He truly is going to change the world, and we are so lucky to be living in his.

Sully 6

Emma’s Story – by Dee Banks

My name is Dee, Co-Founder of Little Stroke Warriors.

When I found out I was pregnant with Emma, I spent hours daydreaming about what her life would be like. I never really wanted for much, just a healthy little girl who felt content in herself. I imagined all the firsts we would celebrate together as she developed her independence in those first years. I was quite ill with morning sickness during my pregnancy and felt really reassured when people would say ‘that’s the sign of a healthy baby’. I remember her 20-week ultrasound, I felt nervous, this is the big one I thought to myself, where they tell you if something is wrong with your child, but everything was fine and we walked out of there bouncing off the walls, she was healthy and beautiful, there is no sound sweeter than your child’s strong heartbeat while they are in utero.
I was 33 weeks pregnant when I walked into my obstetrician’s rooms for a routine appointment and collapsed on the ground. I felt excruciating pain down the right side of my body. I was admitted to hospital with concerns I was having a stroke. Emma’s blood pressure had dropped but after several tests, and an ultrasound to check if she was ok, it turned out that I had a dilated kidney because of her position. They talked about delivering her, but luckily, she moved and we were able to go home.
At 41 weeks we welcomed Emma to the world after 32 long hours of labour. She arrived via emergency C-section. She had become stuck in my pelvis during pushing and I was losing consciousness so the C-section was performed because the labour had become life threatening for me. Regardless of the chaos, it still remains the best day of my life, and it may sound cliché but we fell madly in love with her instantly. The paediatrician examined her and gave her brilliant APGAR scores of 9 and 10.

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The months went on and I guess I always knew something wasn’t right, but put it down to ‘first time mum’ paranoia. Emma hated tummy time, and struggled to grasp with her right hand and reach with her arm. She was 9 months old when I took her to the GP because I had noticed other babies in my mothers group were far more advanced in their gross motor skill development than Emma. I explained to him that she was lacking use of her right limb, he reassured me that she was a big baby and therefore crawling and things would come later than other babies her age. I still felt like something wasn’t right. I asked family, who thought she had developed a hand preference early.
About 6 weeks later Emma was due for her Maternal Child Health nurse review. We sat down and I said to our nurse that Emma had developed a hand preference. She had a concerned look on her face. She also had a concern that Emma had only just began to commando crawl at 10 months old. It was decided then that Emma would need to be assessed by a paediatric physiotherapist and we were referred to the Victorian Paediatric Rehabilitation Service. It was there that we met Teresa. We had no idea how pivotal this woman would be in both of our lives in the coming years ahead. Teresa confirmed Emma’s right side weakness and referred us to a paediatrician for consultation.
We walked into the paediatricians rooms oblivious to the ride we were about to take. He examined Emma and immediately diagnosed her with right side hemiplegia or as some might know it as cerebral palsy. At the time it was hard to swallow, I asked if she would be able to walk and he said he didn’t know. He ordered an urgent MRI and at 12 months old Emma had her MRI performed under sedation. During the MRI she stopped breathing, ill never forget the 6 nurses that moved me out of the way while they shoved oxygen tubes up her nose as I looked at the heartrate machine which had a flat line it was terrifying. After Emma came to it, I walked out of the MRI room with her in my arms and the radiographer said to me ‘we got it’ – ‘got what’ I asked still in shock from the earlier incident. He told me he couldn’t give me anymore information and that her doctor would call me.
As we anticipated Emma’s results I was admitted to hospital for glandular fever and severe tonsillitis. My husband had a fly in fly out job at the time and I had been carrying a huge load of stress as well as trying to adapt to a new life of home therapies and appointments. I don’t think I have ever felt so physically and mentally weak in my whole life, I was completely lost. So many people throwing medical jargon my way, a child who was oblivious to what was going on but struggling to adjust to strangers touching her all the time, poking and prodding, it truly is another world.
A few days after I got out of hospital we received a call to attend the paediatricians rooms to get the results. I went alone, my husband had to fly back to work and I insisted that he go, I would be ok. I had seen my GP and he had seen the report. He advised me that she had a porencephalic cyst on her brain and that it wasn’t life threatening, so I thought I could handle it. The paediatrician did say if the news was bad he would call me straight away, little did I know the extra time was because he was investigating the radiologists findings more closely, I had given myself a false sense of reality.
I walked into the room and her paediatrician asked why I didn’t bring a support person with me. I said ‘oh no I know she is going to be ok I have spoken to her GP’ he told me to sit down. I remember there was a medical student in the room. The look on the paediatricians face said it was bad news, the medical student had tears in her eyes. He put the MRI film on the desk. (change slide) ‘Dee, Emma’s scan is abnormal, there is a large mass on her brain.’ He commented that it may be a porencephalic cyst or an aggressive brain tumour. Emma was happily playing with some toys on the floor and I remember looking over to her, it’s like everything went into slow motion, my vision was blurry as tears streamed down my face. I couldn’t hear anything he was saying, it truly is like you see it in the movies when someone’s world is turned upside down. The only words I could wrangle together were ‘Is she going to die’. His response was ‘look I don’t know, you will be in the hands of a Neurosurgeon at the Royal Children’s Hospital who will be able to give you more information.’ I picked Emma up off the floor and left the appointment in complete shock, I hugged her super tight, tighter than I have ever hugged her before.
I called the Royal Children’s Hospital the following day and they advised me Emma was a Category 1 patient and that the waitlist for Category 1 in Neurosurgery was 4 – 6 weeks. The lady on the phone said to me ‘it’s ok, she is Cat 1, she is on the urgent list’. I’m sure she thought she was being really helpful but I hung up the phone with a heightened fear my child was seriously ill. We received the appointment letter in the mail. Emma would be seen by Dr Patrick Lo, Senior Neurosurgeon. I immediately did a Google search, ‘is he the best, I want the best for my child’. Luckily for Patrick his Google search results came in with all positive stories, a remarkable surgeon and very highly regarded.
In the time before Emma’s appointment with Patrick my family and friends gathered around us. We were all hanging onto hope, we just wanted Emma here with us, anything else could be dealt with. I’ll never forget their love and support during that time, and it has continued, we are so blessed to have them.
Arriving at the RCH on her appointment day I felt a sense of calm, I knew we were in the best place for Emma. I scanned around the waiting room, in the foyers, so many children fighting for their lives, their parents and carers looked physically and emotionally drained. I felt so much empathy for them, not even realising they probably thought that of me too. Our ticket number was called and our stomachs churned, my parents waited in the waiting room ready to catch us if the news was bad, their support has been unwavering throughout this journey. Thinking we would be met with a man in a suit, instead Patrick was in scrubs. He was warm, friendly and down to earth. He looked at the scan and told us that his thoughts were that Emma had a very large porencephalic cyst due to stroke in utero and that he would do another MRI in 6months time just to make sure it wasn’t a tumour.
He was pleased with Emma’s progress, at this stage she was crawling and talking, she was pulling herself up to stand and had made many gains due to the ongoing physiotherapy she had during the diagnosis period. I felt relieved but shocked that she had a stroke. I thought only older people had strokes, not babies in utero. I didn’t carry any risk factors and Patrick couldn’t answer the majority of questions I had, not through lack of expertise but through lack of research available to him. He did comment that the 33 week hospital admission may have been a factor in causing Emma’s stroke.
We left the room with happy tears, but I think we focussed more on the ‘she isn’t going to die’ than the ‘she has had a stroke’ news.
I would come to learn in the future that fighting stroke was a series of tall rocky mountains that we would continue to climb in order to give our daughter the best chance of living a typical life. I would learn that there was little information available in Australia to give me a sense of what the journey would be like, to give me a sense of hope, an idea of what to expect, tools on how to advocate for my child and what support we might need. I would learn that attending an emergency department with our daughter and saying to nurses and doctors that she has a history of stroke would only result in a blank stare and a response of ‘kids don’t have strokes’. I would learn that our weeks would be filled up with appointments, physio, OT, speech and orthotist and that this team would become a huge part of our lives, I credit them for playing a major role in Emma’s success and for that I am grateful.

I would learn that fighting stroke meant that I was also my child’s physiotherapist, occupational therapist and speech therapist. I would learn that taking my daughter for her immunisation needles was nothing compared to witnessing her have 18 Botox injections as I hold her down with the nurses and stare into her eyes with the ‘it’s going to be okay’ look on my face, while inside I’m just as terrified. However, I would also learn that impossible was possible. I would learn that with our amazing family and friends around us we could withstand any storm that came our way because they are constantly there embracing Emma and ourselves with their love and positivity in good times and bad. I would learn that I gave birth to the most beautiful, determined and resilient little girl who takes everything in her stride. I would learn that by contacting your organisation to ask if anyone else was going through this journey, it would connect me with the most incredible warrior mama, who would not just become a beautiful friend but who would stand beside me as we brought the community of Little Stroke Warriors together to make this fight just that little bit easier on all of us.

Emma’s further MRI confirmed the stroke diagnosis. Although it was devastating for our family, I can’t put into words how satisfying it is to watch your child beat all the odds against them. Emma can walk, talk and although she has some issues with her right upper and lower limb I can confidently say she is kicking strokes butt. She is very musical, has just started ballet and she has a cheeky sense of humour. She is a content child, she is gentle and kind. We encourage her to participate in all age appropriate activities, and whatever barriers come up we learn how to steer around them. Parenting a child with stroke is never ever giving up on them and always using the words ‘you can’ because if we don’t believe she can then who will. We still have all the firsts – they have just come a little later than expected. She is the love of our lives and she inspires us every single day with her strength and determination.

There is so much left to do in this country for paediatric stroke. Kylie and I with our community are raising our voices for our children and for all future parents and children who are diagnosed with stroke. It is our mission to raise awareness, provide adequate support for families, information about stroke and how to plan their journey so they are not left feeling as lost as we felt. It is a priority for us that when a parent or carer presents to the hospital or doctors surgery with a child who shows signs of stroke that they are attended to urgently because they are aware that ‘kids have strokes too’. It is also a priority that education departments are informed of how a stroke will affect a child’s learning ability so they can be provided with the resources they need to thrive. There are so many gaps and some might say that we are dreaming big, but stroke messed with the wrong mothers and we won’t stop until we see change.

I’d like to share a famous Mohammed Ali quote that redefines the meaning of impossible.
“Impossible is just a big word thrown around by small people who find it easier to live in the world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”

Thank you for taking the time to read our story.

Anika’s Story – by Kylie Facer

My name is Kylie Facer Co-Founder of Little Stroke Warriors.

On the 6th September 2016 at 6.45pm my beautiful daughter Anika Jade was born weighing 7p13oz via an emergency c section due to a failed induction. Despite this rough start Anika’s APGARS were 9 & 9 – PERFECT!

Kylie C section
My husband and I were over the moon! What a little miracle we had created. We were filled with Joy, wonder and elation. We couldn’t wait to introduce her to the world. These introductions however would have to wait.

During our first full day as ‘new parents’ we noticed an odd movement in Anika’s hand. This movement was a very small but rhythmical tick in her right hand. I brought this to the attention of one of our midwives who said to me “oh babies have odd movements” something about it just didn’t sit right though. We saw this movement on a few more occasions that day and again mentioned it. “We’ll let the paediatrician know” was the next response.

On the morning of the 8th September we were preparing for Anika’s first bath. Today we were being discharged out to the Crown Plaza at Newcastle (Newcastle Private ran a brilliant program which allowed parents of healthy babies be discharged to the hotel but under the care of a midwife) we were so excited, we had arranged to have our visitors come to the hotel and meet Anika instead of the hospital as we thought it would be more relaxed and easy going. Our main midwife Hannah had come down to take us through the bathing process and do all of Anika’s weights and measurements. It was during this bath that Anika suffered a significant seizure. Hannah had us grab the phone and film the seizure which had progressed from a tiny tick in her hand to her whole arm moving as well as her foot and lip. Hannah then ran the footage down to special care where our paediatrician had coincidently dropped in to see another baby.
We were immediately rushed down to special care. To this day I credit our paediatrician’s quick actions as well as those of our midwife with saving our beautiful girls life.

ANika Bath
Anika was quickly put onto oxygen, by now the seizures were making it hard for her to breath, she was given a shot of Phenobarb and the Neonatal Intensive Care Transport Service were called. Before I knew it I was chasing a humidicrib through the crowded hallways of the John Hunter Hospital headed straight for the NICU. The experience must have been terrifying for my husband. Whilst I went in the Ambulance with Anika, he was on foot between the two hospitals not knowing where his baby daughter and wife had been taken. As he was asking directions he broke, he realised it was the first time he had said the words “my daughter” and it most certainly wasn’t in the context he would have liked.


Anika was hooked up to the Brainz machine for monitoring and tests were ordered for the following day. We sat by her bedside and watched. Not understanding what was happening. From being happy in our little new baby bubble in our hospital room one minute to being moved to special care and then being transported by the NETS team to the NICU we just didn’t know what was happening. All the medical staff were amazing during this process however no one had given us even a few possible issues that we could be looking at. We’re not medical people, I’m an Accountant and my Husband is a Gardener, we were barely even parents at this stage – needless to say, we feared the worst!!

Anika NICU
The next morning 9th September our 2 day old baby was subjected to a lumber puncture (we had to rule out meningitis and infection) and was rushed through for an MRI. At this point I don’t think I had felt fear like it. I was soon to learn my fears were only just about to take hold. Shortly after the MRI, the Head of the NICU Dr Paul Craven came to Kris and I as we stood by Anika’s bed and escorted us out past our waiting family to a very small dark meeting room. We all knew it couldn’t be good. We had so many unspoken fears running through our heads. Dr Craven was accompanied by a Neurologist, a Councillor, our NICU nurse and a trainee nurse. Before we knew what was happening he was saying “your daughter has suffered a massive stroke”. We were heart broken, terrified and confused. Dr Craven kindly informed our family what had happened as I was by this time quite unwell (I had had an emergency caesarean 2 days earlier and instead of recovering from that and enjoying the first few days of motherhood, I found myself dealing with the unimaginable. I was in terrible pain, having trouble breathing from the epidural and I was panicking). Neither my husband or I had the mental or emotional stamina or to be honest, a true understanding of what we had been told, to be able to relay this to our family – some of which hadn’t even yet met our daughter. Other than the diagnosis of the Stroke we were given no real helpful information. We didn’t know what areas of the brain had been effected, what the possible or probable problems were that Anika would face only that the Stroke had damaged the majority of the left hand side of her brain. We were handed a medical paper which dealt with Ischemic Stroke in Neonatal however trying to decipher this required a medical degree – something neither of us possess. Our paediatrician was horrified that we had been given this piece of literature and told us not to even attempt to read it. She said it was something that even she would have issues understanding in our situation. The next day 10th September there was continued monitoring, we were shown the brain scans – something that is truly terrifying to see (we were told at this stage that if Anika had of been on the outside when this happened it probably would have killed her), we were told not to expect too much from Anika, that she may not be able to see, drink or eat let alone master any of the other skills people need for normal functions, the councillor dropped in whilst we were completing “Cares” and mentioned linking us into the Cerebral Palsy Alliance and then promptly left (We didn’t see or hear from her again!) and then finally, finally we were able to have some visitors!
Everything settled down after this, there were no more seizures, I was able to start trying to breastfeed my baby (yay she could swallow without any problems (that was our first milestone achieved) and on the 12th September we were released from the NICU and transferred back to the Newcastle Private where we settled into some hard core bonding, lessons on feeding and bathing (try again) and more visitors.

Anika and Daddy
The morning of the 15th September rolled around and finally we were going home! I still remember driving down our road, I remember the song on the radio and I remember being so overwhelmed with happiness I was crying all over again. My mum and sister were waiting for us with a little welcome home party – such an emotional day! During our time in the hospital Kris and I trawled the internet looking for information that was accessible to the everyday person not more medical jargon, we had been given enough of that. Everyone had warned us against doing this but when you aren’t given anything useful you tend to go looking yourself – Dr Google here I come! Unfortunately, even by doing this we could find nothing. I searched for support groups and information on outcomes and came up empty handed.

Going Home
Once we were settled in at home we had visits from the community nurse who knew that something had happened but didn’t know what. She had no training in Paediatric stroke so we all muddled through. At the very least she was able to talk to me about mental health and postnatal depression. I was putting on a big happy face – inside I was not so great!
At 6 weeks of age we started seeing the Cerebral Palsy Alliance. Anika was the youngest baby they had ever had referred to them! At the time I was terrified. What did this mean? There are so many scary stats around CP. In hindsight – this was one of the greatest things that could have happened to Anika. Our CP Team are now part of our family and we are so grateful to them for the work they have and continue to do. We can now also look back at the seizures that Anika had and see them as a blessing in disguise. They are what alerted us to the stroke. Had we not have seen the seizures we may not have known till quite some way down the track that there was something wrong. We would have missed out on all this valuable therapy time. People have a tendency to look at a glass as either half full or half empty, those people are missing the point when it comes to neuroplasticity – the glass (in a lot of cases) can be refilled. Our daughter is a shining example of refilling that glass! Most nights whilst feeding or during nap time through the day I trawled Facebook sites looking for someone else that was in my position. I don’t know why it hadn’t occurred to me to contact the Stroke Foundation – maybe because I had the old adage in my head that it was a service that was there for older people. Anyway, via the Stroke Foundation FB Page I found Dee. I don’t think I knew how mentally drained and unwell I was until I got to start talking with someone else who had walked my path and was a little ahead of me. From this amazing connection came Little Stroke Warriors (we’ll touch on that later) and a whole community of supportive people – I had found my tribe!
SO the question is – during all this, what did we need?

We needed:
1) A councillor that would talk to us at an appropriate time – not whilst we were trying to do cares or introduce our baby to her grandparents. And most certainly one that continued to check in on us.
2) A support group – someone we could ask questions of – not necessarily a medical person. Someone who had walked our path and knew what to expect.
3) Sensible information about stroke – a very basic handbook that we were able to digest – hell I had plenty of time whilst expressing to read up on this stuff!
4) Information about other issues that Anika may encounter.
What we got:
A very technical paper on paediatric stroke that was so far beyond us all it did was add to our fear
A councillor that saw us for 2 minutes after diagnosis. She was the first one to mention Cerebral Palsy to us and then she walked away. More fear!
So where to from here?
I would dearly love to see any parent – be that of a new born or of an older child receiving their diagnosis to have a whole arsenal of information and support at hand. Our stress levels would have been so much less if we didn’t have to constantly search for information and help. Having someone from the Stroke Foundation make contact with us would have been wonderful. Even if just to say – we’re here! Now I don’t expect people to be mind readers – this is something that needs to come from the hospital – be it via the councillor or through the NICU / PICU team. These relationships need to be established and nurtured to make sure no one falls through the cracks. Having sensible literature available to families in a timely manner is also important. We desperately needed to get an understanding of why this had happened and what the potential outcome was. Unfortunately for us – we still don’t know. All the ‘normal’ causes for Stroke in utero have been ruled out. Of course outcomes are different for each child as well and its important not to scaremonger however having something that gave a rundown on things such as CP, Epilepsy and the myriad of other issues these kids can encounter would have been wonderful.
Community Health Nurses / Local doctors – Far more training needs to be done to ensure these professionals are equipped with the knowledge they require to deal with the ongoing problems and questions our families have. I was astounded the first time a doctor demanded to know why I thought my baby had had a stroke. The look of disbelief still sits with me.

Immediate links to service providers such as CPA. Having Anika’s therapies start at such a young age can only have helped her situation. Every child should have the right to access these services and it should be a connection that is made at the time of the Brain Injury being identified.
So I have spoken a lot about the negative side of Anika’s stroke but let me just take a minute to talk about the positives:
1) We have an amazing therapy support team around us who guide us in everything to do with Anika’s physical development. We know we have a way to go but with these guys in her corner NOTHING is impossible
2) It has given me a greater understanding and appreciation for disability and for those that work in disability support
3) It has introduced our family to the most wonderful community! The Little Stroke Warrior community is the most supportive group of parents, carers and friends I have ever encountered – I don’t have words for how grateful I am.
4) Opportunity – Opportunities like this one today have presented themselves because 2 mums put their heads together and decided that they wouldn’t accept this lack of education and understanding any more.
5) Awareness – we are working on increasing awareness through our local communities and through the country as a whole. So many people are 100% ignorant to the fact that kids can have strokes. I can say that with confidence because until the 8th September 2016 I was one of those people!
Thank you for taking the time to read my story, I hope I have been able to shed a little light on what those first few weeks and months were like. Every day now is easier and we have educated ourselves on what we may expect..

Family Pics

 

Introducing our community to the Stroke Foundation

One of the amazing positives that has come out of this journey is the establishment of the Little Stroke Warrior Community. Every year in Australia one in some 2500 births are affected by stroke. Armed with these statistics we set off to try and find these other families who were going through the same grief. As it stands today, we have a tightknit community of 150 families which is growing week by week. These warrior families are located all around Australia – some live in remote areas which means that their access to services is very limited (case in point – one family had a warrior of similar age to Anika, same right-side hemiplegia, they were located quite a distance from Alice Springs and were able to see a physio every couple of months – this is not ok. I had plenty of exercises and notes from Anika’s physio so via email we got the papers to the family and they then had some extra ideas).

Our families all have different stories as to what lead to their child’s stroke, prenatal, post-natal, stroke as a result from trauma and we even have a family who have two children fighting stroke. The common link we share is the isolation we have felt as a result of the stroke diagnosis. Not having had access to a supportive community that understands and accepts what has happened, a resource where you can see other survivors and their stories which gives you hope of your child’s future development. The frustration of having to constantly explain your child’s stroke to medical professionals, education staff and to the general community. All of these barriers just add to the emotional carnage that one experiences when a stroke diagnosis is given.

A child affected by stroke can face many ongoing health issues throughout their lives. Cerebral Palsy, Heart disease, sensory disorders, Autism, Speech delay, Cognitive delay, Seizures and various blood clotting conditions just to name a few.
The Facebook support group has been established now for almost 12 months and in that time, we have achieved some wonderful things representing our whole community.
We have held community events (Muswellbrook Shire Council turned one of our most significant buildings purple in recognition of Paediatric Stroke), met with some of Australia’s leading medical professionals in the area of Paediatric stroke, lit the Martin Place Christmas tree up with a giant Little Stroke Warrior banner, raised money for various organisations such as Cerebral Palsy Alliance, Victorian Paediatric Rehabilitation Service, the Stroke Foundation and more recently the Royal Children’s Hospital Good Friday Appeal. We have been represented by allied health professionals in the Run Ballarat campaign who are wanting to spread awareness about Paediatric Stroke, and of course being asked to speak here today and share our message has been an absolute privilege.

The biggest achievement by far is witnessing the relationships established in the group, seeing our warrior families come together for playdates and providing support to one another during the good times and the most trying times either online or in person, the kindness and respect displayed in our community makes us feel extremely proud.
We hope that by being here today we can expedite the awareness campaign for Paediatric and Childhood stroke, we hope that with your help we can reach out to more families and communities to spread the word that Stroke doesn’t care what age you are – this is not just an older person’s problem – our youngest most vulnerable citizens are fighting stroke too and the scary thing is the majority of us have no idea why – and in our case before they have taken their first breath.
Thank you for taking the time to listen to our stories, please feel free to ask any questions you like, we will do our best to answer them for you but before we get to that we would just like to show you a little slide show of our warriors – we’re sure you will find them just as inspiring as we do.

Thank you

 

 

Emma’s Story – presented to the Stroke Foundation by Dee Banks

Good Morning, who would’ve thought two years ago I would be standing here sharing our family stroke journey at the National Stroke Foundation meeting.
It is an honour to be in a room with so many people who share the passion of fighting stroke – something that is very close to my heart.
When I found out I was pregnant with Emma, I spent hours daydreaming about what her life would be like. I never really wanted for much, just a healthy little girl who felt content in herself. I imagined all the firsts we would celebrate together as she developed her independence in those first years. I was quite ill with morning sickness during my pregnancy and felt really reassured when people would say ‘that’s the sign of a healthy baby’. I remember her 20-week ultrasound, I felt nervous, this is the big one I thought to myself, where they tell you if something is wrong with your child, but everything was fine and we walked out of there bouncing off the walls, she was healthy and beautiful, there is no sound sweeter than your child’s strong heartbeat while they are in utero.
I was 33 weeks pregnant when I walked into my obstetrician’s rooms for a routine appointment and collapsed on the ground. I felt excruciating pain down the right side of my body. I was admitted to hospital with concerns I was having a stroke. Emma’s blood pressure had dropped but after several tests, and an ultrasound to check if she was ok, it turned out that I had a dilated kidney because of her position. They talked about delivering her, but luckily, she moved and we were able to go home.
At 41 weeks we welcomed Emma to the world after 32 long hours of labour. She arrived via emergency C-section. She had become stuck in my pelvis during pushing and I was losing consciousness so the C-section was performed because the labour had become life threatening for me. Regardless of the chaos, it still remains the best day of my life, and it may sound cliché but we fell madly in love with her instantly. The paediatrician examined her and gave her brilliant APGAR scores of 9 and 10.

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The months went on and I guess I always knew something wasn’t right, but put it down to ‘first time mum’ paranoia. Emma hated tummy time, and struggled to grasp with her right hand and reach with her arm. She was 9 months old when I took her to the GP because I had noticed other babies in my mothers group were far more advanced in their gross motor skill development than Emma. I explained to him that she was lacking use of her right limb, he reassured me that she was a big baby and therefore crawling and things would come later than other babies her age. I still felt like something wasn’t right. I asked family, who thought she had developed a hand preference early.
About 6 weeks later Emma was due for her Maternal Child Health nurse review. We sat down and I said to our nurse that Emma had developed a hand preference. She had a concerned look on her face. She also had a concern that Emma had only just began to commando crawl at 10 months old. It was decided then that Emma would need to be assessed by a paediatric physiotherapist and we were referred to the Victorian Paediatric Rehabilitation Service.

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(Emma pictured here with dropped right arm/hand)

It was there that we met Teresa. We had no idea how pivotal this woman would be in both of our lives in the coming years ahead. Teresa confirmed Emma’s right side weakness and referred us to a paediatrician for consultation.
We walked into the paediatricians rooms oblivious to the ride we were about to take. He examined Emma and immediately diagnosed her with right side hemiplegia or as some might know it as cerebral palsy. At the time it was hard to swallow, I asked if she would be able to walk and he said he didn’t know. He ordered an urgent MRI and at 12 months old Emma had her MRI performed under sedation. During the MRI she stopped breathing, ill never forget the 6 nurses that moved me out of the way while they shoved oxygen tubes up her nose as I looked at the heartrate machine which had a flat line it was terrifying. After Emma came to it, I walked out of the MRI room with her in my arms and the radiographer said to me ‘we got it’ – ‘got what’ I asked still in shock from the earlier incident. He told me he couldn’t give me anymore information and that her doctor would call me.
As we anticipated Emma’s results I was admitted to hospital for glandular fever and severe tonsillitis. My husband had a fly in fly out job at the time and I had been carrying a huge load of stress as well as trying to adapt to a new life of home therapies and appointments. I don’t think I have ever felt so physically and mentally weak in my whole life, I was completely lost. So many people throwing medical jargon my way, a child who was oblivious to what was going on but struggling to adjust to strangers touching her all the time, poking and prodding, it truly is another world.
A few days after I got out of hospital we received a call to attend the paediatricians rooms to get the results. I went alone, my husband had to fly back to work and I insisted that he go, I would be ok. I had seen my GP and he had seen the report. He advised me that she had a porencephalic cyst on her brain and that it wasn’t life threatening, so I thought I could handle it.
The paediatrician did say if the news was bad he would call me straight away, little did I know the extra time was because he was investigating the radiologists findings more closely, I had given myself a false sense of reality.
I walked into the room and her paediatrician asked why I didn’t bring a support person with me. I said ‘oh no I know she is going to be ok I have spoken to her GP’ he told me to sit down. I remember there was a medical student in the room. The look on the paediatricians face said it was bad news, the medical student had tears in her eyes. He put the MRI film on the desk. ‘Dee, Emma’s scan is abnormal, there is a large mass on her brain.’ He commented that it may be a porencephalic cyst or an aggressive brain tumour. Emma was happily playing with some toys on the floor and I remember looking over to her, it’s like everything went into slow motion, my vision was blurry as tears streamed down my face. I couldn’t hear anything he was saying, it truly is like you see it in the movies when someone’s world is turned upside down. The only words I could wrangle together were ‘Is she going to die’. His response was ‘look I don’t know, you will be in the hands of a Neurosurgeon at the Royal Children’s Hospital who will be able to give you more information.’ I picked Emma up off the floor and left the appointment in complete shock, I hugged her super tight, tighter than I have ever hugged her before.
I called the Royal Children’s Hospital the following day and they advised me Emma was a Category 1 patient and that the waitlist for Category 1 in Neurosurgery was 4 – 6 weeks. The lady on the phone said to me ‘it’s ok, she is Cat 1, she is on the urgent list’. I’m sure she thought she was being really helpful but I hung up the phone with a heightened fear my child was seriously ill.
We received the appointment letter in the mail. Emma would be seen by Dr Patrick Lo, Senior Neurosurgeon. I immediately did a Google search, ‘is he the best, I want the best for my child’. Luckily for Patrick his Google search results came in with all positive stories, a remarkable surgeon and very highly regarded. In the time before Emma’s appointment with Patrick my family and friends gathered around us. We were all hanging onto hope, we just wanted Emma here with us, anything else could be dealt with. I’ll never forget their love and support during that time, and it has continued, we are so blessed to have them.
Arriving at the RCH on her appointment day I felt a sense of calm, I knew we were in the best place for Emma. I scanned around the waiting room, in the foyers, so many children fighting for their lives, their parents and carers looked physically and emotionally drained. I felt so much empathy for them, not even realising they probably thought that of me too.  Our ticket number was called and our stomachs churned, my parents waited in the waiting room ready to catch us if the news was bad, their support has been unwavering throughout this journey. Thinking we would be met with a man in a suit, instead Patrick was in scrubs. He was warm, friendly and down to earth. He looked at the scan and told us that his thoughts were that Emma had a very large porencephalic cyst due to stroke in utero and that he would do another MRI in 6months time just to make sure it wasn’t a tumour.
He was pleased with Emma’s progress, at this stage she was crawling and talking, she was pulling herself up to stand and had made many gains due to the ongoing physiotherapy she had during the diagnosis period. I felt relieved but shocked that she had a stroke. I thought only older people had strokes, not babies in utero. I didn’t carry any risk factors and Patrick couldn’t answer the majority of questions I had, not through lack of expertise but through lack of research available to him. He did comment that the 33 week hospital admission may have been a factor in causing Emma’s stroke.
We left the room with happy tears, but I think we focussed more on the ‘she isn’t going to die’ than the ‘she has had a stroke’ news.
I would come to learn in the future that fighting stroke was a series of tall rocky mountains that we would continue to climb in order to give our daughter the best chance of living a typical life. I would learn that there was little information available in Australia to give me a sense of what the journey would be like, to give me a sense of hope, an idea of what to expect, tools on how to advocate for my child and what support we might need. I would learn that attending an emergency department with our daughter and saying to nurses and doctors that she has a history of stroke would only result in a blank stare and a response of ‘kids don’t have strokes’. I would learn that our weeks would be filled up with appointments, physio, OT, speech and orthotist and that this team would become a huge part of our lives, I credit them for playing a major role in Emma’s success and for that I am grateful. I would learn that fighting stroke meant that I was also my child’s physiotherapist, occupational therapist and speech therapist. I would learn that taking my daughter for her immunisation needles was nothing compared to witnessing her have 18 Botox injections as I hold her down with the nurses and stare into her eyes with the ‘it’s going to be okay’ look on my face, while inside I’m just as terrified.


However, I would also learn that impossible was possible. I would learn that with our amazing family and friends around us we could withstand any storm that came our way because they are constantly there embracing Emma and ourselves with their love and positivity in good times and bad. I would learn that I gave birth to the most beautiful, determined and resilient little girl who takes everything in her stride. I would learn that by contacting your organisation to ask if anyone else was going through this journey, it would connect me with the most incredible warrior mama, who would not just become a beautiful friend but who would stand beside me as we brought the community of Little Stroke Warriors together to make this fight just that little bit easier on all of us.
Emma’s further MRI confirmed the stroke diagnosis. Although it was devastating for our family, I can’t put into words how satisfying it is to watch your child beat all the odds against them. Emma can walk, talk and although she has some issues with her right upper and lower limb I can confidently say she is kicking strokes butt. She is very musical, has just started ballet and she has a cheeky sense of humour. She is a content child, she is gentle and kind. We encourage her to participate in all age appropriate activities, and whatever barriers come up we learn how to steer around them. Parenting a child with stroke is never ever giving up on them and always using the words ‘you can’ because if we don’t believe she can then who will. We still have all the firsts – they have just come a little later than expected. She is the love of our lives and she inspires us every single day with her strength and determination.
There is so much left to do in this country for paediatric stroke. Kylie and I with our community are raising our voices for our children and for all future parents and children who are diagnosed with stroke. It is our mission to raise awareness, provide adequate support for families, information about stroke and how to plan their journey so they are not left feeling as lost as we felt. It is a priority for us that when a parent or carer presents to the hospital or doctors surgery with a child who shows signs of stroke that they are attended to urgently because they are aware that ‘kids have strokes too’. It is also a priority that education departments are informed of how a stroke will affect a child’s learning ability so they can be provided with the resources they need to thrive. There are so many gaps and some might say that we are dreaming big, but stroke messed with the wrong mothers and we won’t stop until we see change.


As I finish, I’d like to share a famous Mohammed Ali quote that redefines the meaning of impossible.
“Impossible is just a big word thrown around by small people who find it easier to live in the world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”

 

Thank you.

National Stroke Foundation Meeting

We were honoured to be asked to guest speak at the recent Stroke Foundation National Meeting.  Kylie and I were invited to share our paediatric stroke journey with all staff nationwide. We also spoke about our incredible Little Stroke Warriors community. The Stroke Foundation welcomed us warmly and we received a standing ovation with lots of tears! We raised many concerns we have about the lack of resources for families dealing with paediatric stroke and our mission to raise awareness and create resources so that no family will feel isolation the way we felt during the diagnosis period.

Kylie and I would like to share with you Anika and Emma’s stories as well as the story of how Little Stroke Warriors came about. We are still pinching ourselves about how successful this community has become as it evolves.

We have decided to publish our speeches on the blog as a way of empowering other families to speak up and so you can get to know us and our story a little more.

Thank you so much for making this community what it is, a safe forum where people can feel supported.

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Hugo our Hero

Hugo is our third child, a beautiful little brother for Riley and Matilda.

As with my previous pregnancies, everything went pretty smoothly. The only hiccup was at 12 weeks gestation, routine blood tests revealed I had contracted Parvo virus (otherwise known as slap cheek), and this can pose a serious risk in pregnancy. As a result, I was monitored a little more closely with extra scans at 16 and 30 weeks but nothing abnormal was detected and my obstetrician reassured me all was fine. However, in the 39th week of pregnancy I had a day where Hugo didn’t really move in the womb.  This wasn’t overly unusual as he tended to be most active late at night and first thing in the morning but I could generally rouse him with a poke or prod of my belly so I was a little concerned.  I decided to sleep on it and then called the obstetricians office in the morning.  The midwife told me to come straight in and to bring my bag! I arrived at the rooms a little nervous but as soon as she connected me to the monitor, there was a heartbeat and he started to wriggle again. I breathed a sigh of relief. The following day I attended my regular obstetrician appointment where he performed a routine scan and found that my fluid levels were low. The combination of this with the reduced activity of the previous day, he decided it was time to have this baby.  I was booked in for an induction the following day. Everything went according to plan. My labour progressed quickly and Hugo was delivered without complication. His APGAR was normal and as far as everyone was concerned, we had another healthy baby boy. Life couldn’t be any more perfect. We were moved to the ward where after initial checks, the midwives pretty much left us alone which suited me just fine.  I did query whether I should be waking Hugo to feed him as he was very sleepy for the first 24 hours. The midwives were not concerned as he was feeding well when he was awake, and his output was fine so I took the opportunity to get some sleep while I could because as a third time mum I knew all too well what was coming in the weeks ahead. Well, I thought I did! How wrong could I have been!

HugoNewborn

 I am a big believer in the first 8 weeks of motherhood being about survival, and not to stress too much about feeding, sleeping, routines etc but I just had this gut feeling that something wasnt right. Hugo was a very unsettled baby.  He screamed a lot, and was very squirmy like he was in pain and didn’t settle well after feeds. I thought maybe my luck had run out with my first two children and we had a baby who was going to be hard work. At 6 weeks old, I took Hugo to get his first set of vaccinations. For my other children, I had always gone to the local council vaccination sessions but for some reason I took Hugo to the GP for his vaccinations.  This turned out to be the best decision I could have made.  First of all, the GP diagnosed Hugo with an inguinal hernia which required surgery, but more importantly, when the nurse administered the vaccinations, she was monitoring him afterwards and noticed that his eyes were turned all the way to one side and flicking. She seemed quite concerned so she called in one of the senior GPs who shrugged it off as nothing to be worried about and he put it down to an immature nervous system. Fortunately she had also called in Hugos GP and she suggested a trip straight into the Royal Childrens Hospital, given both the hernia and the eye issue.  The ED doctor witnessed the nystagmus (eye flicking) but when they called the senior doctor, the problem seemed to have resolved so he advised that if it happened again to try and capture it on video and show it to our paediatrician at our checkup. At 8 weeks of age, Hugo underwent surgery to repair the hernia. It was supposed to be a day procedure but Hugo didn’t wake easily from the general anaesthetic and he wouldn’t feed at all so we were admitted for the night and I had to syringe feed him to keep him hydrated. After 24 hours he had recovered from the effects of the anaesthetic and had returned to regular feeding, so we were discharged with no concerns

At 11 weeks old, I took Hugo to his paediatrician checkup determined to get some answers as to why he seemed to be such a cranky baby.  He cried a lot and seemed to be in pain so I was thinking along the lines of silent reflux.  I had taken several short videos to show the doctor what I was talking about and I just kept pushing for answers. Hes my third child, Im not the precious type, and I just knew there was something not right. I just didn’t think that something would be as serious as it ended up being! I will be forever grateful that our paediatrician listened to my concerns, even if it was just to shut me up. I think he knew that I wasn’t going to walk away empty handed so he ordered an ultrasound through the fontanel, based on the nystagmus which I had managed to capture on video. He told me it wont show anything but alas it did.  The ultrasound showed shadows on the brain which the paediatrician said could be just fluid but that further testing was required to determine exactly what was going on. I asked several times what he thought it could be but I didn’t really get any answers other than they needed to do an MRI to get a more detailed image of the brain. There was certainly no discussion of worst case scenarios.

MRI Hugo 

  The next 48 hours involved lots of phone calls and our paediatrician pulling some strings to get us in at RCH for an MRI. A last minute cancellation gave us our lucky break. Lucky in that we finally had an answer, but not so lucky, that we now had a stroke diagnosis. The paediatrician was as shocked as we were. Unlike a lot of other paediatric stroke sufferers, we never witnessed any kind of seizures with Hugo and neither the paediatrician or us observed any obvious difference in the movement of Hugo’s limbs in his first few months of life.  According to the neurologist, Hugo most likely suffered his stroke in utero on the day where I felt no movement, and by the time he was delivered, the brain swelling had reduced enough so he didn’t present with seizures.  This explains why he was so sleepy in that initial 24 hours of life. Our precious baby had just suffered a significant brain injury. We underwent lots of follow up testing to try and determine the cause of the stroke but everything came back clear. It has taken me a long time to accept that there was no medical cause for Hugos stroke, but at the end of the day, the outcome isn’t going to change even if we can pinpoint the exact time and cause of the event so I just had to let it go for the sake of my own wellbeing.

The best advice our neurologist ever gave us was after he showed us the MRI images of Hugo’s brain. He said I have to show you these images, but now you need to forget them and focus on your baby because I have seen children with far worse brain damage doing amazing things. So, at just 4 months of age, our precious new baby began his journey at RCH with an amazing occupational therapist. We worked hard, doing everything we were told to, squeezing in therapy sessions between feeds and sleeps, all the while trying to keep life as normal as possible for the other two children.  I was no longer just Hugos Mum but now also his therapist.  I took this role very seriously and never missed a home session, even carting specific toys on interstate holidays with us. On reflection, my advice to other parents would be to give yourselves a break occasionally because you deserve it and your warrior probably needs it. Hugo always seems to flourish after we have taken a mini break from home therapy. 

 HUgoTherapy in a box

Unfortunately, our story doesn’t end there. Almost 12 months to the day after we received the stroke diagnosis, we were dealt another blow. Hugo was suffering infantile spasms. There was basically an electrical storm going on in his brain and left untreated, it would have caused further permanent brain damage. Once again, it was my motherly instinct that thought something wasn’t right. Hugos weak arm was jerking upward and his body was falling forward during play. I managed to capture it on video and sent it to our OT. She suggested sending it onto the neurologist who rang me at 6:30pm and told us we needed to get to hospital that night. My heart sank. An EEG was scheduled for the next morning. From this, Hugo was diagnosed with infantile spasms and we began a 3 week course of high dose steroids. I remember walking out of the ward and bursting into tears. Hadn’t this kid suffered enough? What would his future look like? The combination of stroke and infantile spasms now put him at even greater risk of epilepsy. What else could the world throw at us? The steroids caused Hugo to become an angry, hungry, screaming baby with strength beyond his years. His face became puffy from all the drugs. I can honestly say it was one of the toughest 3 week periods of my life and I would not wish it upon anyone but the steroid therapy worked, so it was worth every heartbreaking day.

 Hugo Holiday in the sun

 I came to dread October. October 2014 stroke diagnosis. October 2015 infantile spasm diagnosis. What was October 2016 going to dish up? I can happily say we have had nothing new to deal with other than the usual toddler tantrums!  We have soldiered on with various forms of therapy – occupational therapy, physiotherapy, aqua therapy, speech therapy, orthotics, chiropractic. You name it, I’ll try it.  Hugo is now 3 and has continued to wear a night splint on his left hand since he was a baby to prevent his hand from fisting. He was late to walk and had a speech delay but fortunately with some great therapists and lots of hard work, he always gets there in the end. We can be thankful for his determination as he doesn’t give up easily, and trying to keep up with his siblings can only have had a positive impact. It hasn’t always been easy, especially juggling the other children but I have an amazing village supporting us, and when I have fallen, they have been there to pick me up. Hugo continues to amaze us with where he is today. People who don’t know our story are often surprised when I tell them he has had a stroke. This is the best form of recognition for all the hard work we have put in.  We take one day at a time and as new hurdles arise, which they will, we will deal with them as we have done in the past. Head on!

 

 

Our Warrior Hannah

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 diarrhoea. 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 the children’s school 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 covered her up and got her comfy and continued to open up 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 in 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 arms and ran towards the front door as we tried to decide ‘do we take her to the doctors? or ring 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 off 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 working away.
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 (who was away at work) and have him and any other close family members make their way to PMH to see her and say their goodbyes.

Hannah and Georgie
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.

A friend’s daughter came to look after our other children and her mum drove me to the hospital. 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, 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, that I didn’t know what was wrong but that she was in a safe place and to fight as hard as she could and Mummy & Daddy both loved her very much, I then called my husband and told him it was serious, and to come now.

When we arrived at PMH we were taken up to level 6 and escorted to Hannah’s room in the Paediatric Intensive Care Unit and met a nurse and doctors. They let us quickly talk and pray over Hannah and escorted us to our room in another wing of the hospital, we were told to get some rest.

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 fast and 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 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. We sent a plea out on our Facebook page and begged our church communities, friends and family to pray for Hannah, send her positive vibes; invited people to come in and see her in PICU to talk to her, pray over her, sing to her, tell her a story, let her know they too were here fighting alongside her. 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 I, 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, her voice, buzzing nursing staff when her meds were late or when she was crying in pain, we faced many challenges during that time, 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 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 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 she has been diagnosed with left sided hemiplegia, sensory impairment throughout her upper left arm, left sided hemianopia, 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 its 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!

Hannah

 

Trey Hunter – Sportsman, Brother and Warrior!

The day we found out we were expecting our second child we were so excited and could not wait to meet our little bundle of joy. My pregnancy was pretty straight forward and normal, morning sickness included. I did have a feeling all the way through my pregnancy that something was wrong. The feeling was that strong I even mentioned it to my Doctor on several occasions but was assured that being my second pregnancy it was going to feel different.

The day after my due date I went into labour naturally. I went to the hospital just before lunch to be checked out and was sent home until I was in full labour. I spent the afternoon timing my contractions and it was decided at 8pm it was time to head back to the hospital. All went well and at 10pm we welcomed our second son Trey Eric Hunter into the world. He was born without any medical assistance, weighing a healthy 8lbs and was the spitting image of his big brother Beau. In that moment, everything seemed perfect.

The next morning I was sitting in my hospital bed, eating my breakfast while just looking at Trey in awe of what we had created. In that moment I had that horrible feeling come flooding back. While I was watching Trey I had noticed his foot twitching, so I pressed my buzzer for the midwife. She was lovely, told me not to worry as it’s probably just his blood sugar levels and she took him over to the special care nursery to be checked out. She wasn’t gone long before she came back to get me. She couldn’t explain what was going on but told me the Doctor wanted to talk. At this point I had no idea what was going on and neither did his Dad, Les who was on his way in with Beau. I walked into the special care nursery to find lots of Doctors surrounding his crib. Les then turned up as the Doctor explains that our newborn son was having seizures. They had put him on medication but they couldn’t control the seizures. Doctors decided that he needed to be transferred from Maitland Special Care Nursery over to Level 3 care in the NICU at John Hunter Children’s Hospital.

I still remember the ambulance ride like it was yesterday. Sitting in the back with the Doctor, just staring at my newborn son not knowing what was going on as tears rolled down my face with Les following in the car behind. As soon as we arrived at John Hunter Children’s Hospital we were taken straight to the NICU where they told us that they needed to perform a lumbar puncture as they suspected meningitis. So we were asked to leave the NICU as it needed to be a sterile environment. We waited down stairs for my parents and once they arrived we all went back to the NICU. The procedure had been completed and we could go back in to be with Trey. I remember a conversation between my mum and a nurse when we first walked in. My Mum asked ‘He is doing ok isn’t he?’ The nurse looked at her and said ‘If he was doing ok he wouldn’t be in Level 3 care in the NICU’ we all looked at each other in complete shock, not the response we expected.

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The next day the results came back in from the lumbar puncture and it all came back clear, which was great news but it still didn’t give us the answers to all the questions. The next step was an MRI and within a few days the news was finally broken, Trey had suffered a Stroke. Hearing those words absolutely crushed us and we had no idea what to expect. The Doctor’s went on to explain that the type of Stroke he had suffered was that bad that if we had suffered the same Stroke we would not have regained the use of our right side or worse could have caused death. This was not the news we were expecting but after a few days in limbo, we finally had answers.

Trey was 10 days old when we could finally bring him home, it was exciting and daunting all at the same time. He was still on medication, so we had to learn how to administer that before leaving.

From that moment on Trey has been seen by a long list of specialist and therapists such as neurologists, haematologists, gastroenterologist, endocrinologist, physio, paediatrician, OT and speech pathologists just to name a few. Trey has had countless blood tests, EEGs, MRI’s, X-ray’s, lumber puncture and he has even had an endoscopy. He has had many admissions to hospital due to sickness and needing to be put on a drip to keep him hydrated to avoid another Stroke.

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While seeing our haematologist (who we consider one of the best Doctor’s EVER), it was discovered that Trey had a blood clotting disorder called Protein S Deficiency. This means his blood clots easier than others. Because he has already had a Stroke, he is at higher risk of another. His haematologist did a lot of family testing and found the Protein S Deficiency was in my side of the family but it had never been discovered because we had no blood clotting issues before Trey. At this time we found out we were expecting our 3rd son Declan, Trey’s haematologist gave me a referral to see an adult haematologist and she decided I needed to go on Clexane to keep us both safe.

At the age of 3, Trey’s Paediatrician decided it was time to start weening him off his medication. That went well and we had a few years without any seizure activity.

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At the age of 6 Trey started having seizures again and was straight away put back on medication to try to control them. Although the medication worked for the most part, his Doctor’s decided to do some investigations. Over the next few years he would be officially diagnosed with Epilepsy. It felt like another blow for our little man, but he took it all in his stride.

Trey has recently celebrated his 10th birthday. He continues to amaze us every day. He has a mad passion for soccer and is actually really good at it. He has just been recently selected for a rep program for the second year running. His favourite A-League team is the Newcastle Jets. He is also a major Liverpool and Barcelona fan. It’s really exciting having a conversation with him about the sport because he really knows his stuff. He dreams of being a Socceroo one day.

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Unfortunately school is a bit of a hurdle as he has a mild intellectual delay and he struggles with his emotions. He will struggle all the way through school but we will be there to support him and we are working to get him all the help he deserves.

It’s not easy being a parent of a Stroke survivor with constant appointments and therapies. Always having that doubt in the back of your mind, always wondering what’s going on in their head and second guessing everything. Questioning if something is connected to the Stroke or just normal. Sometimes it feels as though people doubt us and what we are doing for Trey. As much as I wish this never happened to Trey, we love our son and wouldn’t change him for the world.

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Warrior Bailey

Meeting Bailey
Day 1
Bailey  and his twin brother Beau were born early in December 2015 by Caesarean Section. The C-Section went perfectly with no complications and both boys APGAR results were 10/10.
After the C-section, in recovery we noticed Bailey’s arm was shaking quite a lot however we were told some babies just adjust differently to the outside world and there was nothing to be worried about.
Later that afternoon, we started to notice that when we would move Bailey he would let out a high pitched squeal and he wouldn’t stop squealing until he was still again. After two hours of being on the ward, we noticed that Bailey had blood in his nappy but we were told he was just dehydrated and needed to be fed more.
Day 2
It wasn’t till 1pm the next day that we started noticing him twisting his face in a peculiar way, we called the Doctor to get him checked, she said to keep an eye on him but not to worry to much as some newborns are quirky. We then noticed his left eye and left knee twitching in time and he was making a sucking motion so again we then called in the nurses but when they checked him he seemed normal albeit a little dazed. We were told to call her if it happened again and she would be straight in. Within ten minutes it had happened again so we called the Nurse in for the third time, she went and talked to the nurse in charge and came back and took Bailey into another room for observations. It wasn’t long after that the nurse came in and explained that a code blue was called as he had another seizure and that was the quickest way to get the Paediatric doctors over to see him.
Bailey was then sedated and hooked up to all sorts of machines. To see our little baby boy laying their not knowing what was going on was heartbreaking. Later that night Bailey had a ultrasound on his head, which found he had a bleed on the brain.
Bailey NICU
Day 3
Bailey had his MRI and it was confirmed he had a stroke and bleed on the brain. I remember sitting their holding my partners hand while the Doctor explained to us what this meant. I felt numb! I couldn’t understand why the Doctors couldn’t tell us why or when this had happened to our little man. We went from Cloud 9 to feeling like life was crashing down on us but still trying to be strong for both Bailey and his twin brother Beau.
Day 5
Things started looking up for us, Bailey was able get off the sedation medications which meant we were able to get cuddles and we were able to start breast feeding again. He also had another head ultrasound which showed the blood was decreasing.
Day 8
My partner, Bailey’s twin brother Beau and I stayed in the family room in NICU and were able to have Bailey overnight to see how things went, unfortunately he had a temperature early the next morning and couldn’t come home with us. They thought it could be Meningitis so they put him straight onto antibiotics and put him into isolation (which meant we had to gown up and put gloves on whenever we wanted to touch him) Lucky enough 48 hours later tests came back negative to meningitis and they put the high temp down to the blood on his brain dissolving.
Day 11
Bailey was released from hospital, but we had to go back to the hospital every second day to have a brain ultrasound to make sure his swelling and the bleed was still reducing.
First 6 Months
We had lots of appointments for the first six months but it was really all just a waiting game. No one could tell us if he would be able to walk, talk or have much use in his arm. My partner and I found this extremely hard and frustrating as we had no clear view of what Baileys future was going to be like.
Bailey 4mths
Stroke Affects
Left Arm:
Bailey qualified to take part in a study at the Children’s Hospital which focused on his Left Arm. During this 6 month study we had to restrain his good arm and had set exercises to do daily whilst we have seen major improvements in the functionality of Bailey’s arm, it still isn’t great but already 100 times better then when we started. We still do exercises daily but have learn to include them into everyday activities.
Bailey’s latest arm achievement is performing the actions to twinkle twinkle little star by putting both hands above his head and opening both hands up.
Left Leg
Bailey started walking at about thirteen months. We noticed he would trip a lot and became concerned so we got in contact with a private physiotherapist who prescribed orthotics. Bailey has tightness in his calf muscle as well dragging his foot. The orthotic helps him to take better quality steps while helping to stretch out his calf muscle.
 
Vision
Very early on we noticed that Bailey would stare to the right and barely look over to the left, we got onto Vision Australia and they guided us with some exercises we could do to help correct this. He made improvement and just after his first birthday his vision was tested  and it was found that he had lost about twenty degrees of his left field of vision. Lucky enough running around with his twin brother he is learning to adapt to everyday life.
Behaviour
Bailey has always been easily frustrated when things become too hard for him. To divert the attention from his frustrations, Bailey started forcing his fingers/hands down his throat. We got in touch with a private Occupational Therapist to assess him and he picked up on this straight away, we had been noticing his frustration for some time but was told it was an attention thing. Our new Occupation Therapist told us that it is common for kids with Cerebral Palsy as they struggle  with the ability to plan the steps needed to do everyday tasks.
Into the future
Bailey is one determined little boy who amazes us everyday. He is our little Miracle that we are forever thankful for. Even though some days are tough having appointments or doing daily therapy we wouldn’t have it any other way! Paediatric Stroke isn’t talked about much and we knew no one else that had gone through it, so our journey has been hard and lonely at times! I am now apart of a beautiful, supportive Facebook group of parents on the same or similar journey as us (@littlestrokewarriorsaustralia)! I wish we had found this group when we were in Hospital.
One thing we remember a lovely nurse saying to us while in NICU was “Baileys story is yet to been written” he’s our beautiful determined little warrior who has an amazing journey ahead of him and we can’t wait to see what story he writes.
Bailey today