Imagine you hadn’t long moved your young family from Tasmania to the Sunshine Coast, had recently given birth to your third child, and your eldest daughter was fighting for her life.
This was the reality for Emma Price and her family in December last year.
“Our 10-year-old daughter Charlotte has a rare condition called Angelman syndrome, caused by a deletion on the 15th chromosome that results in lack of speech, global developmental delay, a seizure disorder that can be difficult to treat, sleep disturbance and intellectual disability,” Emma said.
“In early December 2018, Charlotte became unwell with what we thought was a standard cold or virus. But due to her inability to communicate the severity of her condition or how she was feeling, she ended up in a critical condition in the Paediatric Critical Care Unit at the Sunshine Coast University Hospital.
“My husband James and I became very concerned about Charlotte’s health as she had deteriorated quite rapidly and upon arrival at the emergency department at SCUH her oxygen saturation levels were exceptionally low. Charlotte had acute respiratory distress and was placed on a ventilator in the early hours of Saturday 9th December, and she remained there for 10 days.
“Throughout that time Charlotte also suffered multiple organ failure; with her kidneys and liver failing due to her condition and other factors.
“There were many moments during Charlotte’s stay, particularly in the first few days, that were touch and go. Her condition worsened and treatment options were limited, and we were not seeing any improvements.
“This is the most unwell we had ever seen our daughter, even after one previous ICU admission and multiple admissions due to seizures. It was a very harrowing time for our family.”
Making the traumatic experience even harder for the Price family was the fact that just one week prior to Charlotte’s admission in to hospital they had welcomed their newborn son Arlo.
“In our minds we were thinking we would welcome one child into the world and possibly lose another, all within a week,” Emma said.
“We were all tired, exhausted and I was physically recovering from a c-section just seven days prior.”
Adding to the incredible stress was the distance between the hospital and the Price’s home in Noosa.
“On a good day with no traffic Noosa is still a 45-minute drive away from SCUH,” Emma said.
“Charlotte’s condition was so poorly, particularly within the first week, that we couldn’t bear to be 45 minutes away in case something happened, and we didn’t make it back to the hospital in time.
“We also needed to be close by to provide consent to doctors as needed, which did happen during the night on one occasion. With a newborn in tow, it also wasn’t feasible to be making the 1.5 hour round trip each day to be at the hospital.
“Luckily my Mum was staying with us at the time due to arrival of Arlo the week prior, so she could stay at home with our seven-year-old son Ollie, but James and I ended up checking in to a small hotel room across the road from the hospital so that we were close.
“We arrived at the hospital at 7.30am most mornings to ensure we were there for the doctors rounds which we found invaluable for progress updates. Then we wouldn’t leave – reluctantly – until 8pm most nights to be there for nurse handover and find out who was with Charlotte overnight.
“Whilst our ultimate concern was for our daughter and her health, having to stay away from home in a hotel room with a newborn baby was incredibly challenging.
“We didn’t have the comforts of home – sterilising bottles, warming bottles, washing clothes and all the things that come with a newborn – were all very difficult.
“It was also an expense to our family, right before Christmas that saw us out of pocket around $2500 between accommodation and purchasing food supplies in and around the hospital.”
Thanks to the amazing care of the PCCU team, Charlotte is recovering slowly but well, at home.
The Price family is eternally grateful to the medical staff that saved their daughter’s life and in an act of appreciation, are supporters of the 2019 Wishlist The House The Coast Built campaign, that will see a house built just a few streets away from the Sunshine Coast University Hospital for the sole purpose of housing family members with sick loved ones in hospital.
“Having an accommodation option that was readily available, set up for a family, close to the hospital and at no cost to us would have been a very welcome option for us,” Emma said.
“Finding and booking accommodation was the last thing we wanted to think about while our daughter was critically unwell and having a space that our other son could come and stay with us in so we could be together as a family would also have been helpful during that time.
“I would like to say a massive shout out and thank you to everyone who is making The House The Coast Built possible. You never know when you will be in the position that you require the help that this house provides – having a place to lay your weary head when you’re waking hours are consumed by what is happening with your child would be such a welcome relief.
“I wish this was available during Charlotte’s recent admission to PCCU. Thank you from the bottom of my heart to all involved – touch wood we’ll never need this help in the future, but in the event we do it’s a relief knowing this would be available.
“To everyone that’s contributed – simply put yourself into our situation and you will realise the value of what you are contributing to.”
To find out how you can get involved with this cause, visit: thehousethecoastbuilt.org or to donate to the cause visit: www.giving.wishlist.org.au/donate and select “The House the Coast Built” from the drop-down menu.