By Rachel Williams
Death, and in particular the death of a child, is a topic most people want to avoid but for two amazing women at the front line of the paediatric palliative care industry, they say the experience shouldn’t be feared.
Instead, Narelle Martin and Andrea Coe both highlight how inspiring it is to see families spend time together and create special memories.
Narelle is the facility manager at Sydney’s Bear Cottage and has been at the hospice since 2001 _ earning an OAM for her services to the industry in 2016, while Andrea has been a nurse practitioner at Queensland’s Hummingbird House for nearly four years and is now its hospice lead.
Both say their facilities feel like home to many guests, with newborns through to 18 and 19 year olds using the services.
“We are a warm, friendly, home-like environment while providing the child with the best nursing and medical care and caring for the family as well. They are greeted with warmth and often our therapy dog Beau (a Golden Retriever),” Narelle explains.
Adds Andrea: “We call it a home away from home because basically it is a big house with lots of indoor and outdoor spaces with big windows to let the light in, so it is a lovely, warm environment.”
Both facilities can cater for up to 8 guests at a time. Many admissions are as a result of genetic conditions, neuromuscular conditions and more commonly, brain tumours.
“Some children come multiple times throughout the year for respite over many years because they are surviving much longer because of the advances in medical care, while some will come once as an emergency admission to get their pain under control or for their end of life care and will only be here for a few days,” Narelle says.
Andrea has worked as a nurse for 25 years across children’s cancer and general paediatric care and says the hospice environment provides a personal experience compared to a traditional hospital setting.
“While the hospital system is improving it is still a sterile environment,” Andrea explains.
“I felt like at the hospital it was a conveyer belt where the child dies and you move on and that wasn’t a positive experience so that inspired me to come here and make a difference.
“It is a holistic approach here at Hummingbird House _ we cook and do the laundry and it is a welcoming atmosphere for the siblings.
“Some families come here and the parents are just so exhausted from their daily reality. They come here literally to breathe and they are so relieved to have help.
“They can still do all the medications and feeds if they want, or they can hand that responsibility over to us so they can just be with their child and read books or swim in the pool or go out with the other family members.”
Narelle says it’s a similar situation at Bear Cottage.
“We care for the whole family with things like massage and haircuts and trips to the zoo to make the family’s stay as comfortable as possible,” Narelle says.
“We aim to create as many memories as possible with lots of photo opportunities, taking finger prints that are made into jewellery and recording heart rates edited with music as a keepsake.”
Both women say it is important to give people time to spend precious moments with their loved ones both before and after they die.
“It can be challenging but also very rewarding work because you can see the difference it makes to a family and a child’s life. We become an extended family member in many cases,” Narelle says.
“We can bring some happiness and create special memories and we take away so much from what they are going through.
“One little girl recently had her entire room covered in fairy lights and pink and purple chiffon. We try to give them experiences like taking them to the beach if they have never seen the ocean or letting a child see a sunrise.
“We often say its like a ‘Club Med’ for the siblings with toys and art and craft. It’s not a clinical setting where they have to be quiet all the time. They meet other children going through similar circumstances and it realises death so it is not something to be feared for the kids.”
The pair agree that it is an honour to work with families at a devastating time.
“I feel every day how lucky I am to be working in a job where I can make a difference to someone’s life,” Narelle says.
“I have seen and met so many amazing families over the years. One thing that hit home a couple of years ago on a Friday afternoon the door bell rang and there was a man at the door whose daughter was the first child to die here at Bear Cottage and he just returned to say ‘hi’.
“Some families stay in contact and that shows the importance of the place and how significant it is in their lives. I don’t think you would return to the hospital if your child died there.”
Says Andrea: “I am honoured to work in the role and I count my blessings every day. It can be a big reality check especially when the child you are working with is the same age as your own child.
“I remember having a really in-depth conversation about end of life decisions with one family who had a child the same age as my son and then left work to pick him up from playing basketball and I cried all the way up the highway thinking how lucky I am.
“It sounds counter-intuitive but it is generally a positive and uplifting place to work with a lot of laughter and lightness among the darkness.”
The advice she would give to families in the situation is to reach out for help.
“Be proud of the things you are achieving. Don’t be scared to be vulnerable and show emotions and ask for help.
“Don’t be afraid – it is actually just a place where very tired people come to rest.”