leaping livers
lapping the lagoon

Our kids

Montana

Montana was born with a rare metabolic disease called OTC. 

Last year, it was decided she would require a liver transplant in the hope that it would give her a better quality of life.  It was one of the scariest decisions we have ever had to make.

Montana practically lived in and out of The Children's Hospital at Westmead all her life.  She lived on a very strict low protein diet and in the end, she stopped eating altogether.  She relied on round the clock feeds via her gastrostomy tube.

Since her transplant, Montana is now eating anything and everything she can get her hands on! Almost seven-months post-transplant, she has not had one Hospital admission.

Montana struggled with reading and writing as this horrible disease affected her brain when her levels weren't right.  Now, she is moving in leaps and bounds.  She can read her books from front to back without any problems and she is so full of energy which now allows her to run, laugh and play like all of her friends.

The transplant has changed Montana's life dramatically and we are forever grateful to her Donor for giving her a second chance at life.

Kate

Kate was born in July 2015 in San Diego, USA.  At Kate's two-month check, we raised a concern that the white of her eyes were a little yellow - we were sent off to the Hospital to take Kate's blood.  Within a couple of hours, we received a call from the Doctors to say that we needed to take Kate immediately to emergency as her bilirubin levels were dangerously high.

Our whole world suddenly changed - we went from being a family with three healthy children to a family with an eight-week old baby who was seriously ill and would need major surgery and then a liver transplant to ensure she would live past the age of one.

Kate was listed on the donor list in January of 2016.  As each day passed, we watched Kate deteriorate.  She was unable to roll as her tummy was so distended.  She gained weight, but it was through fluid retention and she fundamentally became malnourished.

In April of 2016, we received a call to say that a donor had been found for Kate - it was a living ultraistic donor - this is an incredibly rare and unusual occurrence.  Kate received her liver in April 2016.

Unfortunately, Kate's recovery did not go to plan.  Over the course of the following eight months, Kate spent more and more time in Hospital than she did at home.  Kate stabilised enough for us to make it back to Australia in January 2017.  But after becoming gravely ill within a few days of arriving back home, the team at The Children's Hospital at Westmead had the task of telling us that Kate would require another transplant.  In March 2017, Kate received her third liver - her second through organ donation.

Kate, throughout her entire life, has maintained a smile and a genuine love of life.  She is now doing all the wonderful and challenging things a three-year-old child should be doing.  She is a passionate ballerina and has recently taken up soccer.  Everyone who meets her is touched by her outgoing nature and lust for life - even when they don't know her amazing story!

Not a day passes where we do not think of our Donor families.  This experience has changed our whole lives and perspective on how we live our life now.  We hope that by sharing our story we can encourage people to talk about organ donation and the truly life saving and life change impact that it has.

Emmy

Our Emmy and her twin sister were in Royal Prince Alfred Hospital's Neonatal Intensive Care Unit (NICU) building up their strength waiting to be taken home when we first heard the words "biliary atresia". I recall googling these words in the parents' room trying to find out as much as possible. Emmy was only 13 days old at the time and our joy quickly turned into concern and fear after reading statistics that showed that 80% of babies diagnosed with biliary atresia would need a liver transplant by the age of two.

We were transferred to Sydney Children's Hospital, Randwick, where she would undergo a series of tests which confirmed the diagnosis and she would need to have a Kasai procedure to have any chance of survival. After what seemed like forever, but in reality only four hours, the Doctors came out and said we could visit Emmy in the Paediatric Intensive Care Unit (PICU). She was so small and had cords hooked up to her, she was so helpless. The next few months were tough, we worked hard to get Emmy as strong as she could be and hit her milestones whilst in and out of Hospital, but after concerns around the deterioration in her blood results and continuing to be jaundiced, were transferred to The Children's Hospital at Westmead.

Our first visit was not what we had expected. The Doctors highlighted their concerns and wanted Emmy to be evaluated for transplant as soon as possible. During this time, my husband and I agreed that we would consider a live donation.  I was "worked up" to be a donor in the event that Emmy would need a liver urgently. That day never came as we were fortunate enough to receive a call from the transplant coordinator to let us know that it was now Emmy's time.  Emmy's surgery was booked for 4am the following morning. Needless to say, my husband and I were not getting any sleep that night!  When the time came, we wholeheartedly placed our baby girls life with the amazing team to do what they do best - save lives! Six hours into surgery, we received a call to let us know that the new liver was working beautifully and that Emmy would be out of surgery soon.  That phone call was one of the first glimmers of hope we had in 14 months.

Dr Thomas eased our minds that the surgery was relatively uncomplicated and that the donor's liver was a beautiful liver that matched her perfectly. Our fears and concerns were eased when Emmy opened her eyes the following morning to show us that she was clearing through jaundice and the whites to eyes were finally white!

It was a long two weeks in PICU but with 24 hour round the clock nurses, we finally got to head back to the Clancy Ward in isolation for her final recovery period. Day by day, Emmy would get stronger, working hard with the OT, PT, Speech Pathologist and continual care from all the doctors and nurses.  Just as we were preparing to go home for in time for the weekend, Emmy's blood results showed some signs of rejection. She was sent for a biopsy to confirm it was not viral. Once this was confirmed, Emmy was given further immunosuppressants to combat her rejection. We stayed for another week before another biopsy showed some signs of improvement after a strong dose of immunosuppressants and unexpectedly, we were discharged after six weeks in hospital!

We are now eight-months out of transplant and we are slowly getting back to our "normal" family routines. Emmy is doing great, so much so that she takes advantage of her twin sister and five-year-old brother! We know there will be bumps along the road but we are now certain that Emmy will lead a fulfilling life full of love and laughter.

We will forever be indebted to our donor and their family for their selfless act in a heartbreaking and difficult time. We also thank everyone at The Children's Hospital at Westmead for their tireless efforts to ensure that our sick kids can lead the best lives they can be.