Diagnosed at only 20 weeks and born at 35 weeks, the start of Precious’ life was filled with the phrase ‘will never’.
Will never be able to live off of a machine.
Will never be able to see.
Will never be able to swallow.
Will never be able to express herself.
This was all relayed to Precious’ parents in a meeting with various consultants, social workers and carers. To say it was overwhelming would be an understatement, Esther, Precious’ mum describes:
“We had this big, massive meeting with all these people who I’d never met before. They’re just looking at you and everybody’s telling you how complicated things are going to be. The consultant told us Precious would never be able to express herself, or feel the touch of others. It felt very negative and overwhelming.”
Noah’s Ark Children’s Hospice was also present at that meeting, and have cared, not only for Precious, but for her entire family since Precious’ birth. Instead of focusing on the limitations and difficulties that Precious and her family would face, Noah’s Ark instead took a different approach. As Precious’ Dad, Raph, explains:
“The best way to describe Noah’s Ark is that there was a great sense of hope in comparison. They never bombarded us with talks about end-of-life and what she wouldn’t be able to do. They’ve always helped up celebrate Precious’s life and focus on what the possibilities are.”
FROM 2013 TO NOW
Almost nine years on, both Precious and Noah’s Ark Children’s Hospice have grown and reached new levels of possibility that would have been difficult to imagine all those years ago.
Precious is able to spend a lot of time off her oxygen machine and no longer requires her saliva to be suctioned. She can swallow and can even enjoy yoghurt – her favourite flavour is tangerine. She can see the lights that Vikki, Noah’s Ark’s Play Specialist, moves over her face and is able to recognise Vikki through the perfume she wears. She makes it very clear when she wants to move onto a new activity by making noises. She loves being cuddled. And, like most children (and many adults!), is calmed by her teddy.
Noah’s Ark Children’s Hospice has also transformed during this period. Going from a service offering only community-based care, to a care provider partnering with leading NHS trusts, providing a much wider breadth of care in multiple settings. This includes The Ark, our award-winning, state-of-the-art children’s hospice building.
Despite everything that has changed, what has remained the same is Noah’s Ark’s consistent support. As Esther explains:
“Where things have been hard for us as a family, Noah’s Ark have always been there for us. I have a lot of faith in them, because when we have been struggling they always find a way of helping us or to get somebody else to help us. I really, truly, appreciate each and every thing that they have done for us.”
Raph puts it simply: “I can’t think of a single time that they have let us down.”
Through connections and partnerships with other hospitals, Noah’s Ark Children’s Hospice works closely with all of the care providers supporting Precious. One of Precious’ consultants, Dr Juliet Pearce, is a Medical Director at Noah’s Ark, so many of their meetings take place at The Ark as opposed to the hospital – which is much easier for the family.
SPECIALIST PLAY SUPPORT
A consistent presence in the family’s life has been Vikki Kempster, who started as Precious’ Specialist Carer before becoming a Play Specialist. By always being child-led and adapting play to what Precious can do (and likes to do!), Vikki has helped Precious develop cognitively and has seen her reach new milestones that many thought were impossible.
Vikki has also been a consistent source of support for Precious’ siblings. Specialist Play helps children gain confidence, learn to express and communicate their feelings and build resilience. Mary, now 17, wrote the below for Noah’s Ark almost seven years ago:
FAMILY LINK
As a key part of our Model of Care, Noah’s Ark is always dedicated to empowering families and building resilience, as opposed to creating a dependency on services. This is true for all of our services, including Family Link.
The Family Link Worker is the consistent point of contact for a family whose purpose is to advocate for and signpost families to the best possible support. For Precious’ family, the support from Family Link has been invaluable – from helping source financial support after Precious’ dad left work to care for his family, to helping the family secure suitable housing. As Raph explains:
“When dealing with the local authority, it can feel like people are waiting for you to fail. People don’t always treat you like an individual, and the support they offer you isn’t suitable. Noah’s Ark have always empowered and supported us. They have attended meetings, written letters, and told us about things that we just wouldn’t have known. We’ve come a long way as a family, and this sense of calmness and peace we have now, we owe to Noah’s Ark.”
THERE EVERY STEP OF THE WAY
There is a misconception that palliative care is only for end-of-life. Precious is about to celebrate her 9th birthday, and has been with Noah’s Ark since her birth. This journey that Precious, her family and Noah’s Ark have been on together has always focused on helping them to enjoy life as much as possible – to make the most of every day. Because Precious and her family were referred to Noah’s Ark at the point of diagnosis, they have been able to benefit from that consistent care and support.
Precious has many complex needs, which can make it difficult for her family to have time off from providing care themselves. The extensive care plans at Noah’s Ark mean that every new carer understands Precious’ needs, which has allowed the family to take breaks. Noah’s Ark has also been there when Precious’ condition has escalated, supporting the family emotionally in hospital.
Having a child who has a life-limiting condition can bring a lot of uncertainty. Throughout, Noah’s Ark has brought a sense of calm and peace, always advocating for the family’s best interest and finding a way to help. The support has always been flexible – provided at the family home and at The Ark, which has been really appreciated as the impact of COVID is still felt.
“Any sense of sanity I have, I owe to Noah’s Ark” – Raph, Precious’ Dad
HOPEFUL FOR TIMES AHEAD
As Precious approaches double digits, her family are hopeful for times ahead.
“I know that Noah’s Ark will always be there for us. And because of everything we have gone through, we understand the system so much more now. At this point in time, I have a lot of hope for the future.” – Esther, Precious’ Mum
When the family move into their new home, they’re hoping to turn one of the rooms into a Sensory Room. Noah’s Ark previously provided the family with a ‘Bubble Tube’, a sensory toy that Precious has enjoyed at The Ark. Vikki is quick to point out that Noah’s Ark only pointed them in the direction of how they could get one of these toys – the family did the rest themselves, and should be proud of all they have achieved as a family.
As Vikki says:
“It has been a real privilege to support Precious and her family for so many years. They have really come a long way and I’m happy we have been able to play a part in that transformation. Every child deserves the opportunity to play and enjoy life, which is why we always focus on what they can do and build play around them.”