Introducing Lauren Fenn, Clinical Nurse Manager, Rainbow Place

Lauren grew up knowing she wanted to work with children.  It was as simple as that!  Initially, she wanted to train as a midwife but her mother suggested that perhaps, being straight out of school, she didn’t have enough life experience to go straight into midwifery.  Her mother understood Lauren’s need to work with children though, Lauren comes from a family of schoolteachers, all of whom speak of their desire to make a difference in the lives of young people.

Lauren followed her mother’s advice and chose nursing instead.  She spent as many of her placements as possible working in paediatrics and most of her early working years were spent in paediatric oncology and surgical.   The children in paediatric care tend to stay in hospital for much longer periods of time and it enabled Lauren to really feel like she could make a difference.  “People always advise that you shouldn’t get connected to your patients, but in my experience, you do.  It’s almost impossible not to.  For me, it is a part of the job that is very special, I knew I was having a positive impact on the lives of the children and their families at such a challenging time.” 

Lauren talked about those early years of her working life and how, looking back, they almost certainly led her to Rainbow Place.  She talked of being exposed to very, very unwell children, and of those connections which were so important.  

“I remember a gorgeous young girl who had severe gut issues and spent the first two years of her life in hospital.  Her parents simply couldn’t be there with her all the time so, out of necessity, I became that familiar face, the person who cared for her and made her feel safe.  I saw her in the supermarket recently, and her mother brought her over to say Hi”.

Not all the children Lauren cared for were so lucky.  “We had a young baby who was born with an ‘Incompatible with life’ syndrome and spent most of his life in and out of hospital, until he died at four years old.  It’s incredible isn’t it, that there is a syndrome called ‘Incompatible with life’, but modern medicine enabled that wee boy to live for four years”.  Lauren bumped into his mother in the street, not long ago.  “The connections you make when you play such an important role in the lives of the children and their families are lifelong” said Lauren, “and I was delighted to hear the mother had gone on to have two gorgeous daughters.”

There was another two-year period when Lauren cared for a 10-year-old girl with a brain tumour.  She loved fish, and Lauren and a colleague purchased a fish tank for the hospital ward, and filled it with fish, which the young girl was able to spend hours watching.  Lauren recalls that being a very sad funeral. 

Lauren was only 24 when she, and her partner of just three years at the time, were asked to care for an eight-week-old baby who had been uplifted from his Mother’s care.  The baby had received a serious brain injury and the Doctors advised there was a high chance he would be blind, unable to walk, and unable to eat.

Having learned so much about who Lauren is during our interview, it didn’t come as a surprise that Lauren and her partner took baby Riley immediately.  “We never really thought about the long-term impact of that decision” said Lauren.  “We thought, what will be, will be, and we’ll face the challenges as they come”.

Fast forward 16 years and Riley is a lot more capable than the Doctors originally thought he might be.    “His vision is great, he walks and eats!”, says Lauren, however, there are a number of ongoing health issues that Riley and his family deal with on a daily basis.  “Riley has cerebral palsy, ADHD, frontal lobe damage that causes depression and anxiety and impacts severely on his ability to understand social situations, scoliosis of the spine and some weakness down his left-hand side.   Riley is also tall, strongly built, gentle and incredibly kind.  He has started a chess club at his school and loves lego and puzzles.  He’s an active member of Parafed Waikato where he plays wheelchair basketball.  

Lauren talks about the ongoing medical issues Riley has had, and about his two younger siblings who worry about him when he is sick.

The staff at Hospice Waikato are getting to know Riley pretty well; he often enjoys either an early morning or a late afternoon chat in the staffroom, as he unpacks the dishwasher, makes a hot chocolate, and pores over a second-hand jigsaw from one of the Hospice shops.  

Lauren’s early years at Waikato Hospital, and her experience of being a Mum to Riley, have made her uniquely suited to her role with Rainbow Place.  “At Rainbow Place, we care for children with life limiting illnesses, and many of these are very, very rare.  As was the case with the wee four-year-old boy I cared for all those years ago, it is often due to modern medicine that these children live for many years, and their parents have incredibly busy and challenging lives, caring for these children whilst navigating the health care system in New Zealand.”  Lauren feels very blessed to lead the Rainbow Place team of four registered nurses, three healthcare assistants, and an activities and recreation coordinator.  “I hand-on-heart know that by walking alongside our 62 families with our Rainbow Place team, offering clinical knowledge, collaborating with other healthcare providers to ensure the families receive wrap around care, providing respite care to those who need it, connecting families together, sometimes even attending specialist appointments, we are providing a crucial service and making a very important difference.  Our care is holistic, we wrap a cloak of care around not just the sick child, but their family and whānau too.  It is an absolute honour to support families at this time."

Lauren, and our Rainbow Place families, don’t think too hard about the future.  They just know that their special children will likely live with them for the entire length of their very special lives.

FOOTNOTE:  Funding is the biggest challenge for Rainbow Place.  As New Zealand’s only paediatric respite hospice, we are funded by Health New Zealand to provide respite care only.  As you can see from Lauren's story, we provide so much more than that, and we rely on our community to provide that much needed shortfall in funding.  We have had to cap our current caseload at 62 children and we are looking at ways to adapt our service delivery to ensure we can continue to support these families.  The lack of a sustainable funding model, which has been highlighted in the media recently, along with the challenges we are currently seeing in the paediatric palliative care space in New Zealand, means many families are having to deal with caring for palliative children without the support they deserve.  At Rainbow Place, we absolutely see the benefit of having a paediatric palliative care specialist who could provide support to families in a much wider area than just the Waikato.  There are currently less than two fulltime paediatric palliative care specialists in New Zealand, one based at Starship Hospital (funded by Health New Zealand) and the second based in Wellington at Rei Kotuku, a privately funded charitable trust, with no associated Health New Zealand funding.  It simply is not enough.