Tyler's Story

It was hard to even get him to drink his bottles.  He would get very upset at meal times and never opened his mouth, and then when you’d get a mouthful in he would gag.  It got to a point where we’d all end in tears at meal time.  We then noticed months later he was becoming weak and in some areas regressing.  He started laying on his back to play or would lean when he’d sit upright and at 14 months still had not learnt to walk let alone pull himself up.  Tyler also never seemed content like other children, and would be upset or fussing when he had our full undivided attention and all his needs were met.  Tyler was my first child, so as a first time mother, over the months I raised my concerns with the health nurse to make sure he was ok or whether there was any need for concern.  Everyone says that a mother knows their child best but upon visiting health nurses they’d just say he was a fussy eater or boys are slower than girls, so we in a way acknowledged maybe he was just really slow in comparison to other children.  There was a lot of enjoyment within Tyler too and we just loved him so much no matter what he could or couldn’t do, so that carried us through his first year in life.  Then when Tyler was 14 months I thought he was regressing with more things and my mum instinct just wouldn’t go away.  Ironically the day before our lives changed, we went to the GP to get a referral to a paediatrician as I just felt like Tyler wasn’t ‘normal’ and I had to convince someone of this to see what was going on and get him help.

 

The following day on 2 November 2016, I called my husband James and said I just didn’t feel right about Tyler and to come home so we could take him to emergency.  For two days prior, Tyler had been really lethargic and on this day it seemed to be worse. He wasn’t showing any symptoms of being unwell however, he had no temperature, still had wet nappies etc, he was just really lethargic and I didn’t feel right about the situation.  Presenting to emergency we sat down in the waiting area and waited a couple of hours.  I went up to the desk twice concerned about Tyler and on the second time I got another triage nurse, to whom I insisted Tyler really wasn’t ok.  She said to bring him up the front so she could look at him herself.  She just touched his legs and turned to another nurse and said he was shutting down.

 

We were rushed to a bed in emergency where a room full of people surrounded our little boy.  A little while later James turned to me and said he had heard the doctors talk about airlifting him to Townsville PICU.  I think we went into shock; here I was thinking, “Come on I have to get Tyler home for bath time and bed”, but then we were faced with the reality of our son fighting for his life.  His little body was shutting down in front of us. They then moved us to a Resus Room and started setting things up to airlift Tyler. Tyler was basically unconscious at this point however they were hesitant to intubate him as they wanted to just get him up there.  I couldn’t believe what was going on. No one really knew what was going on, however his body was in severe metabolic and lactic acidosis, hypoglycaemia and rhabdomyolysis.  They presumed sepsis and commenced antibiotics.

 

I flew with Tyler on the plane while James drove up.  Tyler and I got to Townsville at midnight.  I’ll never forget the moment Tyler was wheeled into the ward, it was the middle of the night, all dark, not how you see hospitals during the day, all the rooms had their lights off except for the one illuminated room full of people and equipment there waiting to take Tyler and intubate him.  I recall sitting with the senior consultant for a short moment and I said “This might sound like a stupid question, that you might not be able to answer, but could he die?”  He said that the levels in Tyler’s body were life threatening, and he was in a critical condition with a high possibility that he could pass.  And I don’t know why, but I turned to him and needed to tell him I was 10 weeks pregnant as I had this worry that something could affect the baby too.  He said not to worry, that it wasn’t like that.  I knew James would be pressing to get to Townsville 400ks away, but I had to call and tell him what the doctor said as I couldn’t live with myself if Tyler passed before James arrived.  I signed consent forms for lumbar puncture and waited for James to arrive.  The doctors asked me to wait outside while they tended to Tyler.  James arrived, and I didn’t want to think about how fast he had travelled to get to Tyler so fast.  We were given an overnight room at the hospital down the hall from PICU to go try get some rest while they worked on Tyler, but I just laid there in shock and angst to go be with him.

 

Early hours of the morning came and we were allowed to be with Tyler.  We walked quietly into the room where he lay in a medically induced coma.  I remember they had placed a little knitted green beanie on him which encapsulated Tyler’s pureness but it didn’t disguise the frightening amount of tubes and lines coming from his little body.  My parents flew over immediately to support us and would be there later that morning to be by our side.  Over the next few days the lumbar puncture would come back negative. By now Tyler was out of the coma and still very touch and go as to whether his body and levels would stabilise and lower but he proved to be such a fighter and amazed everyone.  We still didn’t have any answers at this point.

 

A few days later a rehabilitation doctor walked into Tyler’s room late on a Friday afternoon with a very grim outlook on Tyler’s life.  It sounded so negative, things like he will probably never walk or ride a bike or live past this age or do this at that age.  I remember James and I crying when she left the room.  Why was she so negative we thought? It wasn’t until after the weekend that we were taken into a quiet room with the intensive care doctors where they clinically diagnosed Tyler with a Mitochondrial Disease (Leigh’s Syndrome) based on his symptoms and MRI results.  We had no idea what this was or meant; we had never heard of Mito.  And then the doctor continued with the words ‘There is no treatment or cure’.  We just broke.  The look of despair in the doctor’s eyes I’ll never forget.  The doctors knowing I was pregnant sat down with us in another chat and advised that due to not knowing the genetic mutation in Tyler’s DNA that there would be a 1 in 4 chance of the baby having the same disease as Tyler and the same severity and that genetic testing would not be completed in time before the baby’s arrival or even get a definitive answer.  For us personally we would not run any percentage of risk of putting another child or ourselves through this again and we didn’t even know what the future would hold for Tyler at this point.  It was heartbreaking and not easy making a choice to let go of the family you had planned, and already had love for, but it was something we made the hard choice to do at that time, and the doctors were supportive in helping us through this.

 

After 3 weeks in PICU we transferred back to our local hospital for another month and took Tyler home just in time for Christmas.  Tyler had acquired a severe brain injury during the event and had lost all his abilities.  He now had issues with his heart, thyroid, global developmental delay, quadriplegic cerebral palsy, severe spasticity and dystonia, low vision, fed through a nasogastric tube, significant sleep issues and the list went on, but so did our little boy so we made it a promise that we’d make his life as comfortable and enjoyable as possible.  It was very hard transitioning from hospital to home, and with the NDIS newly rolled out it would be a battle and unnecessary 5 month long wait until we got a plan approved for Tyler and another several months until we received equipment for him.

 

Over time we formed a group of very special people that would be involved in Tyler’s journey that we will be forever grateful for.  From doctors, specialists, social workers, nurses, therapists, carers and friends and family, they’d all play a part in Tyler’s and our lives more than they’d ever realise.  And let me tell you, he had some special ladies wrapped around his little finger that he’d charm on their visits.

 

Palliative care team changed our lives and if we could give advice to any parent of a child with any form of rare disease/life limiting illness it’s don’t be afraid to involve Palliative Care, they have a wealth of knowledge not just for ‘end of life’ but for managing and making life comfortable in the time that you may have.  As there is no treatment for Mito having specialists and palliative care to help symptom manage is imperative. But they are also one of the best supports in the sense of understanding and the emotional side, as they are about the closest in understanding what you are dealing with as they deal with special children like Tyler every day.

 

Tyler did not cope in environments that weren’t ambient; it would increase his secretions leading to gagging and vomiting and with his compromised immune system Tyler spent a lot of his life indoors at home where his environment could be controlled.  However to Tyler this world is what brought him such happiness and comfort.  Tyler loved being read to, he loved his tactile ‘That’s not my’ books, Mickey Mouse, Cookie Monster and Hey Duggee were some of his favourite character friends.  He loved when you’d blow bubbles for him, loved bubble baths, when you’d pull funny faces and especially loved kisses and cuddles.  Music played in our home 24/7, literally.  Everything from the Wiggles to Bob Dylan to Eazy E, he loved it all.  However he would be certain to let you know if he wasn’t into your song selection and wanted it changed, he’d let you know by scrunching up his face, giving you a poopy look and letting out a whinge.  His memory for songs and music astounded us.  Tyler could not talk but he moved his mouth open and closed when he’d ‘sing’ along to a song.  He was so in touch with his emotions that if you played a classical sounding song for example that pulled on your heart strings he would tear up and drop his lip.  He started forming an ‘ooo’ sound and shape with his mouth when he loved something.   With the brain injury he acquired, little new developments like this in Tyler were so special for him and for us.  Tyler hardly slept and when he did it would be in short intervals, we joke that maybe he knew he wasn’t going to be here for a long time so wanted to make the most of it.

 

Despite not being able to do everyday ordinary things, Tyler did some extraordinary things.  He had the most beautiful soul beyond his years.  One was that he could tell someone how much he loved them, not by words but by a special look in his eyes. Also his smile changed the lives of others and lightened the darkest of days and made everything ok.

 

We moved to Victoria at the beginning of June 2018; the decision was made on a whim after turning the idea down when Tyler first became sick but we didn’t know how much time we had with Tyler.  It could be a month, it could be 5 years.  At this point in our lives we had nothing more to lose, yet memories with our son to gain.  We moved to be closer to family as we had no one in Mackay, and we would have our own home in order to make modifications as Tyler grew and his needs changed.  We wanted the best possible life for Tyler but sadly would only get 8 more short weeks with him.

 

The events of Tyler’s passing happened fast in the sense that his suffering and regression weren't drawn out, which was always a fear of ours, if Tyler were to suffer and have no quality of life over a long time.   On Sunday 29 July 2018 Tyler woke up quite happy despite fighting a recent chest infection and being treated by antibiotics.  He gave me a cheeky smile as he grabbed his ear like he would every morning and we cuddled.  My Mum, Tyler’s Nanny had stayed with us over the weekend as Tyler wasn’t 100%.  She was walking Tyler around in his pram just an hour after he’d woken up when he started crying in a very strange eerie way; a cry I had never heard before.  I picked him up to comfort him and he went very rigid and silent, his eyes rolled back and then he stopped breathing and went lifeless.  I screamed out for James and ran over and placed Tyler on his side on his wedge in the lounge room.  I hesitated for a moment as we had been concerned that Tyler may be beginning to have seizure like activity and thought maybe he had just had a seizure and I just needed to calm myself down as I’d never dealt with one before, however he was not coming to, he was not fully conscious.  I rang 000.  The ambulance arrived and I asked whether this was end of life as James and I had many discussions that if Tyler ended up in situation again like November 2016 that we would not intervene but let him be at peace as he’d already suffered and fought so hard and that we’d wish to let Tyler pass at home.  But they didn’t really know and neither did the doctors once we were transferred to our local hospital.  But James and I knew deep down what was going on, it was like November 2016 all over again except we knew the outcome this time.  Telling the doctor not to airlift your child for further care and intubation adds to the list of the hardest things we’ve had to do as Tyler’s parents.  They moved us to a quiet room within emergency where we could close the door and dim the lights.  All monitors and oxygen were removed and only an IO line remained for Tyler’s management of comfort.  Doctors were attempting to make arrangements for us to be transferred back home.

 

We held our child in our arms and during his last breaths, playing his music, I whispered to him that it was ok to go to sleep now, that he had been so strong for so long and that it was ok.  In this moment he intentionally squeezed my hand and turned his head into me and moments later took his last breath which was an extra special experience I can’t describe as he was unconscious.  A piece of our hearts left with Tyler in that moment, the moment he literally turned into our Angel.  I have never seen such innocence, peacefulness, and beauty all at once, yet I have never felt so much pain, loss and heartache at the same time; Sunday, 29^th July 2018 at 5:04pm.  We took our little boy home after he passed and shared some precious time.

 

Tyler passed away 12 days before his 3^rd birthday.  He was meant to have a ‘Wiggles’ party.  We had already bought his presents and an outfit and had family flying over to spend his special birthday with us.  Instead we celebrated his life, still sung him happy birthday and I made his Wiggles cake and sent him some balloons to the sky; but he was the missing piece.  His final outfit was the one he was meant to wear on his birthday.  We raised over $3000 for the Mito foundation in Tyler’s honour during this time, thanks to family and friends for donating.

 

The initial shock and adjustment of going from having what society looks at as a perfect family, to a living hell boils down to perspective and the love you have for your child that will outweigh the negative to some degree.  Once James and I accepted our ‘new’ life with our ‘different’ Tyler our life eventually felt ‘normal’ again, a new normal, one that involved numerous medications, therapies, suctioning, sleep deprivation, inserting nasogastric tubes, tears, knowing your child won’t have a long life, but still had so much happiness through memories made with Tyler, that we’ll cherish forever.  Sure, we had days where we hated the world and questioned why this happened to our son, but we were so lucky to have Tyler and to love him.  He was our sunshine and even though we were his parents and he was the one suffering from this disease; he was the one that made us feel ok.

 

Despite knowing Tyler didn’t have a good prognosis and wouldn’t live a long life, it didn’t make his death any easier.  Nothing will ever prepare any parent for the loss of their child.  Your heart physically hurts beyond words knowing you have to live the rest of your days without your child.  Everyone else’s lives continue on while the pain of losing your child lasts a lifetime and there is nothing you can do to fix it.  We have had full DNA testing but no genetic diagnosis as yet which will always be an unanswered question in the back of our minds and we can only hope with science evolving that one day we will have and an answer.  James and I will carry Tyler with us forever and will speak his name and make differences where we can in his honour.  He was our son, our little boy, our Tylie, our Tootsie, and will be forever.  We hope one day a cure is found so that children like Tyler and their families can enjoy a life they deserve.

 

We love you Tylie, sending kisses to the sky for both our Angels until we hold you in our arms again.

Love Mummy & Daddy

xxx

If there is ever a tomorrow that we are not together

There is one thing you should always remember

You are braver than you believe

Stronger than you seem

And smarter than you think

But the most important thing is

Even if we’re apart

I will always be with you in the heart

- Winnie the Pooh -