Why Martin House Children’s Hospice means so much to us.
“I never thought I’d feel so passionate about a charity as I do Martin House. But then again, I never thought I’d need to rely on the support of a charity either.”
[TW: This article contains topics that some readers may find upsetting.]
This year, Silver Cross are proud to be supporting local Children’s Hospice, Martin House by raising money in a company-wide challenge, as well as awareness of the incredible work they do to support families across the Yorkshire region. We have chosen to raise money for Martin House, as it is a charity that has supported one of our colleagues, Esme Westmoreland and her family. To help us achieve our goal, you can donate to our fundraiser here.
To highlight the amazing work carried out by Martin House, and to coincide with Children’s Hospice Week, Esme shares her story.
Cecelia’s story
Esme’s first pregnancy was thrown into uncertainly after an anomaly was detected during her 20-week scan. Following a series of further investigations with the hospital fetal medicine department, and it being unclear whether the baby would be completely fine, or born with serious medical conditions, Esme and husband James decided to continue with the pregnancy.
Born full-term at Leeds General Infirmary, Cecelia faced a number of complex health challenges including poor muscle tone, low oxygen sats, seizures, a heart defect and an unsafe swallow. Her first few months were filled with urgent hospital visits and endless medical appointments with specialists in neurology, cardiology, occupational therapy, feeding teams and ketogenic diet support.
A rare diagnosis and wanting answers
Baby Cecelia was just three weeks old when she stopped breathing and had to be rushed to Barnsley hospital. Doctors found multiple holes in her heart, and she began experiencing seizures. It was a terrifying, overwhelming time.
After three weeks living in Barnsley hospital, (with James and I taking it in turns to sleep on the hospital chair at her bedside) Cecelia was eventually diagnosed with a rare genetic disorder, a chromosome deletion syndrome known as 1p36, which meant a tiny part of chromosome 1 was missing.
We didn’t know what the future would hold. We’d been told by doctors that much of how things would progress with her was unknown. I pushed medical staff to give me answers, but the diagnosis was so rare, they didn’t really know what her future might look like.
Our community paediatrician, Dr Sheila Puri (now on the board of trustees at Martin House), was brilliant. She recommended I read a book called Was This In The Plan? which helped me navigate my feelings and understand some of the challenges we were up against. I really recommend anyone finding themselves in any similar situation, or even those working in medical care to read this book.
At 6 months old, Dr Puri invited us, along with both sets of grandparents to an appointment to discuss Cecelia’s prognosis. She suggested Cecelia was unlikely to see her fifth birthday and offered for us to be referred to Martin House Children’s Hospice.
A place to be a family
I was very reluctant about Martin House at first, I didn't want any more people being involved in Cecelia’s care. Our life was filled with endless medical appointments and various strangers visiting our home, but Dr Puri encouraged us to go and look round before we discounted it. And I’m so glad we did. From the moment we walked through the door, it felt so warm and welcoming, completely different to the sterile hospital environment we’d become accustomed to.
Martin House gave us the space to just be together. Time away from the medical corridors and hospital alarms. Every time we were admitted into hospital, we couldn’t do much apart from sit at her bedside, but at Martin House, Cecelia could enjoy activities around the hospice, and we could relax together while working out how to stop her from being in distress.
The hospice was a haven, families can relax and enjoy the space, parents are offered their own bedrooms, cake, tea and biscuits are always flowing, with both staff and families coming together for home-cooked meals.
There are activities for the children including siblings, art and music therapy, even animals to visit. It was a small joy in some of the most challenging months. Martin House was, in every sense, a home from home.
Through it all, Martin House was there
In the face of so much uncertainty, Martin House offered something vital: comfort and reassurance. Dr Michelle Hills, a consultant at Martin House, along with Dr Puri, helped us to create an advance care plan so that we could help to keep Cecelia out of hospital – it was the one thing that helped us feel a little more in control.
They just got us. Martin House really understands poorly children and can make decisions for families based on what their ‘normal’ looks like.
We were fortunate to book in at Martin House for a couple of planned respite stays, as well as accessing a last minute ‘symptom control stay’ at one point too. These short breaks were so valuable to us, we could bring Cecelia to the hospice, knowing she was going to receive dedicated one on one care, and we could all relax while they took away our caring responsibilities for a few days.
Saying goodbye, our way
A few weeks after Cecelia’s first birthday, her condition worsened. Because of the planning, support, and confidence James and I had gained through Martin House and with the support of her advance care plan, we were able to keep Cecelia at home, where she passed away peacefully in the arms of family.
We then took her to Martin House, where she stayed in one of the hospice’s cooled bedrooms – a comforting, peaceful space for families to spend time together after a child has died.
There wasn’t a better place for us to be. We were able to make those next steps because we had support from the team around us, and we felt reassured because she was near to us.
The team at Martin House handled everything: calling nursery, speaking to care workers and offering advice on funeral arrangements.
It was a relief that we could make decisions at Martin House that we didn’t want to associate with making at home. We’re so grateful to everyone who helped to facilitate the best possible death we could have given her.
I never thought we’d need a charity. Martin House changed our life for the better. It transforms family lives across Yorkshire – and you never know who might need it next.
Why Silver Cross is supporting Martin House
Esme’s story reminded us of something important: any one of us – a friend, a colleague, a neighbour – could one day need the kind of support Martin House provides. That’s why we’re getting behind this incredible charity and raising as much money as we can to support the work they do every single day.
Martin House is entirely reliant on donations to offer its vital services. They support hundreds of families every year with medical care, emotional support, respite stays, even the sudden death of a child who may have been in a road traffic accident for example, and bereavement counselling. Currently there is a huge transformation project happening at the hospice called The Build. As the second oldest Children’s Hospice in the UK, it was time for a long overdue upgrade to help facilitate the care they currently provide for families across Yorkshire. It will also future-proof the services they offer which are ever evolving with medical advancements and children with life-limited conditions living longer.
Our fundraising efforts
To raise money for Martin House, Silver Cross staff – in the UK and internationally – are walking 11,500 miles in just 6 months – the complete distance of the UK coastline. Plus, we’re holding various other fundraising activities throughout the year such as bake sales, sponsored silences and much more.
- £500 can pay for family to have seven sessions with a qualified counsellor
- £1,500 could help members of the community team visit 10 families at home
- £10,000 could help provide end of life care for a baby, child or young person.
- £25,000 will run Martin House for one day
- £50,000 could fund a clinical nurse specialist for a year
Every penny raised makes a difference. Whether you donate, share this story, or are logging walks on Strava to help us walk the length of the British coastline, your support helps keep Martin House running, so they can be there for the next family who needs them most. Find out more here.
From all of us at Silver Cross – thank you for helping us support this incredible cause.
