My hope in sharing Aubrey’s story is to not only acknowledge the life she lived but also to create awareness of the disease that was part of her life. Aubrey touched so many lives in her short time here on earth and it because of this that I feel her story needs to be shared so it can continue to make an impact despite Aubrey not being here anymore. This is Aubrey’s story.
Aubrey Elizabeth was born on Tuesday the 9th of October. You arrived in a hurry at just 38 weeks maybe you knew then your time here would be short. Despite arriving early you were healthy and beautiful and instantly loved by all that came in contact with you. Especially by your big sister Leila, the bond between the two of you was so strong right from the start. Leila always wanted to be close to you and give you lots of cuddles and kisses and hold you any chance she could get. This bond was something that would never fade but only grow stronger as time went on and it was such a beautiful thing to watch as a mum.
Aubrey you were such an easygoing baby right from the start not like your big sister as a baby at all. It was as if you just took everything in your stride and even after being fitted for a hip harness at just one week old you adjusted so well to it. Your favourite thing to do in your early days was getting cuddles from anyone that you could, you just loved being around and close to people and people just loved you as well. Once your hip harness came off at 2 months of age you loved having baths and chilling out on your play mat.
Your first five months of life were filled with lots of special family moments including your first Christmas, first family camping trip and first family holiday. Looking back now I am so thankful for those days that we were able to spend as a family while you were still in good health and I will forever treasure those moments as some of my most favourite memories.
At 5 months old we had our first admission to the Redcliffe Paediatrics Department after you were experiencing difficulties with your breathing and feeding at home. After being assessed by the speech pathology team at the Redcliffe Hospital you had your first naso-gastric tube for feeding placed and so began your journey. Within a week of your feeding tube being placed a Videofluoroscopy was performed which confirmed that you had an unsafe swallow. From there we were referred to the ENT team at the Queensland Children’s Hospital (QCH) for further investigations.
On the 4th of April we attended the ENT outpatients department at the QCH for a further scope which again reconfirmed your unsafe swallow but also that your vocal cords were not functioning as they should. Due to these concerns we were admitted to the QCH for further investigations. On the 16/4/19 a microlarygoscopy and CT bronchoscopy was performed by the ENT and Respiratory teams which concluded that you had tracheobronchomalacia and bronchomalacia or as it sometimes referred to as floppy airways. This would explain your difficulties in breathing and also the noisy breathing or wheezing that we had been able to observe for the pass month or so.
While we were an inpatient at the QCH we were also able to meet both the neurology and metabolic teams who would continue to be a part of Aubrey’s care as we awaited a diagnosis for what was causing all of Aubrey’s current symptoms. What amazed me throughout everything we had been through was your spirit never gave up even when we had a really bad day following your procedure you just kept fighting with everything you had to still be here with us. You still managed to smile through it all and loved to have a chat to anyone that would visit us during our 3 week long admission. You were so strong even when I felt so scared you just kept letting me know that you were ok. We were discharged from the QCH on the 25th of April with the plan to have ongoing follow up with Redcliffe Hospital while we awaited a diagnosis.
We were home again and just in time for your big sisters 4th birthday. It was great to spend some time as a family again after being away from each other for over three weeks. Once home we did start to notice that you were experienced increased involuntary movements in your arm. So an EEG was organized at the QCH, which confirmed seizure activity so you were put on seizure medication straight away. Your secretions were also becoming more of an issue as well as you required more frequent suctioning using the at home suctioning machine that we were provided from the QCH. To help with your secretions we also starting doing at home physio three times a day and we had a physio from the QCH visit us at home twice a week. These treatments really helped with managing your secretions and you loved getting your pats as you would often be smiling and chatting throughout your sessions. It made these sessions even more worthwhile to see you so happy throughout them.
On Tuesday the 7th of May we found out Aubrey’s diagnosis of Gauchers Disease Type 2 a life limiting disease with no cure or life saving treatment. We were all so devastated by this unexpected news and the days that followed were some of the toughest that my family and I would face. Many days spent grieving this news and not knowing how we would be able to move on from it. But we were not in the journey ahead alone. We had the continued support from staff at both the Redcliffe and QCH to help us through what was to come. We would visit the Redcliffe Hospital every Tuesday and meet with Aubrey’s paediatrician for a check up and review.
The weeks that followed involved more hospital stays and new medications but as always you took everything in your stride. You rarely cried or complained and you always managed to smile everyday even when the days were long and hard. I remember one particular hospital admission when you were not well at all. I spent several nights in hospital with you not knowing if you would be ok as you struggled to manage the disease that was slowly taking you over. During this hospital admission we were also told that Aubrey only had about a month to live which of course was not the news we were hoping for. I was not ready for you to leave me yet. But instead of letting this news take a hold of us we decided to take advantage of the time we had and make as many memories as possible.
With the help of the staff at the Redcliffe Hospital we were able to have you baptized at their chapel. This was such a great day as all of our family and friends were able to attend to help us celebrate this occasion. We were also able to organize some family photos to be taken. Lasting memories that could be cherished forever and something that I am able to look back on now and forever.
Well the month passed and you again exceeded expectations and we were able to spend even more time with you, which we were so grateful for. A couple of hospital visits here and there but mostly we were able to enjoy time with you at home. Which meant some family trips to the beach, park and going for walks in your pram enjoying the sunshine as much as we could. We also started some regular respite stays at the Redcliffe Hospital every second weekend to give me a couple of nights of rest.
Unfortunately despite all of our efforts your condition was starting to become worse. Your seizures and pain levels were becoming harder to control and you were requiring more frequent suctioning. But you kept fighting! Everyday you would keep going and even though the times when you were able to interact with me were becoming less and less you still managed a smile or a chat where you could. You never gave up and I never gave up on you, as I wanted you here for as long as we could have you for.
On Tuesday 30th of July we attended a monthly videoconference at the Redcliffe Hospital where we meet with Aubrey’s pediatrician and the metabolic, neurology and palliative care teams at the QCH. As your seizures and pain levels were increasing there were decisions made to increase both your seizure and pain medications. You spent the night at Redcliffe Hospital while I made sure I had everything I needed set up for you at home. We came home on the Wednesday and you seemed the most settled you had been in awhile. The new medications seemed to be working and although you were more lethargic than usual you didn’t seem to be struggling as much.
On Thursday 1st of August while at home you stopped breathing unexpectedly and I performed CPR on you with the help of the 000 staff on the phone. After several minutes of CPR you took your first breath and before I knew it there were a lot of paramedics here making sure you kept breathing. We were rushed to the QCH Intensive Care Unit where a more suitable breathing tube was placed and a central line put in. Even though I didn’t know it at the time this would be your last fight for life.
We spent the next couple of days in the ICU and although there were a few moments in the first 24 hours where we almost lost you, you kept holding on. Our family and friends were able to visit you and spend time by your bedside. It was so hard seeing you this way and it was a very emotional time for us all.
On Saturday 3rd of August we made the incredibly difficult to decision to remove your breathing tube. But not before once last journey. We were lucky enough to be transferred from the QCH to Hummingbird House. We spent some time with you once there before you breathing tube was removed and close family members were able to say their goodbyes, including your big sister Leila who was so sad to see you go. Once your breathing tube was removed my husband and I were able to hold you in our arms while you took your last breaths of life. I never gave up hope on you but you let me know that this was your time to say goodbye. That you fight was over and it was time for you to be at peace now.
As a family we were able to stay with you at Hummingbird House for almost a week until your funeral service the following Friday. This time was so special to us and gave everyone who had been a part of your life an opportunity to see you and say goodbye before you went to your final resting place.
I am very grateful to have been Aubrey’s mum and to have been a part of her journey every step of the way. She was a special little girl that touched so many people’s hearts despite only being here for a short time. Her smile always shone through and her spirit never faded. Aubrey fought her whole life because of this awful disease and she rarely ever cried or complained. She is and will remain the bravest and strongest person that I will ever know. And even though I won’t get the privilege of watching her grow up I will never forget the impact she has had on our lives and so many others she touched along the way. She was truly a beautiful being and did not deserve the fate that was handed to her.