The Way We Care

Gillian, a staff nurse at Rachel House shares her experiences, joyful and sad, and the story of Leah - a wee girl born with half a heart, filled with love.

My job is not for everyone, but it's a huge privilege to care for children with life shortening illnesses like Leah. It is as heartbreaking as it is rewarding. But what keeps our nurses, the children and their families going, is the support from people like you.

Before she was even born, doctors told her parents, Nicola and Simon, that Leah only had half a heart and wouldn't survive the first hour.

Defying all the odds, Leah made it to eight weeks old and underwent her first open heart surgery. It was a thirteen-hour fight for her life and her heart was restarted seven times! Thankfully little Leah survived.

Just over two years later, after her second open heart procedure, Leah suffered post-op complications and had to be rushed back into surgery for five more hours. Again, she kept fighting, and again she pulled through. But it was Leah's third and final surgery that came closest to taking her away forever. Amazingly she survived but now we have to accept she won't be able to have any more operations. After countless procedures and being sedated 27 times, Leah is now terrified of hospitals.

But she isn't scared of Rachel House. She calls the hospice her 'happy place'. Many people think we only deal with end of life care, but most of the time, Rachel House is a place for families to make happy memories together.

CHAS hospices take away the fear and bring joy to children like Leah and their families.

But we need your help to reach every family who needs our care, love and support.

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When I first met Leah, I never could have imagined what this smiley little girl had gone through.

She wasn't supposed to live for an hour, but this little fighter who keeps me on my toes is now coming up for her seventh birthday! Every time she arrives at Rachel House, Leah wants to know everything that's planned for her visit, so the first thing we do is chat it all through. Next stop is always the soft play! It's her favourite activity here, but we have to be very careful as her little heart can't keep up with her excitement.

Rachel House isn't just a safe haven for Leah either - I love seeing her whole family relax as they walk through the doors. The simplest things bring exhausted families so much relief here. Mum and Dad catching up on sleep, her sisters reading a book, and everyone spending time together without worrying about Leah's care.

From a hot shower and full night's sleep to enjoying a family dinner or swimming in the pool. You can help families caring for their child 24/7 to find respite at Rachel House or Robin House.

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What I love most about being a CHAS nurse, is how we can build relationships with every family member. Like making sure Leah's sisters, Mia and Sasha, enjoy Rachel House as much she does, and helping them to access sibling support services from our family support team. We even support Nicola and Simon with the overwhelming medical paperwork for their daughter's care, as they make some of the hardest decisions of their lives.

As joyful as my days are with Leah and the other children I care for, one of the most vital parts of my job is also the saddest - making the final hours of a child's life as comfortable as possible. Even with their family by their side, surrounded by love, it's always such a sad moment.

But we have an amazing team to support the family here, and your generosity makes you a huge part of that. You keep us going - and the families we care for - through our darkest times. Thank you! I might not get to say goodbye to Leah, as her condition means her little heart could stop at any time. But I cherish every joyful moment I can give her with her family, here in her happy place, and your generosity makes those moments possible.

It's the way we care, together.

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