Father takes on epic challenge for children’s hospice

When Alfie Hefford was five-days-old, and following a traumatic birth, his family were told to say their goodbyes.

But Alfie proved medics wrong and is now four-months-old. As a special thank you to Rainbows, because our services have been a lifeline for the family at their most difficult times, dad, Tom, is taking on an epic fundraising challenge.

Later this month, Tom will scale Mount Snowdon seven times – a total trek of circa 80km and equal to the 6,000 metre ascent of Mount Everest – Lukla Starting point to summit. He will be joined by his friend David Bailey, also of Kettering, Northants as they aim to complete the challenge in just four days.

Alfie suffered a traumatic birth in January, which meant he needed immediate resuscitation. “It was an incredibly traumatic time,” said Tom. “Doctors managed to revive Alfie after a prolonged period, but he was found to have significant issues affecting his brain, heart, lung, kidney and liver.”

Alfie was diagnosed with Severe Hypoxic Brain Injury. He was unable to breathe on his own and he suffered seizures. He was transferred from Kettering General Hospital to Leicester Royal Infirmary.

“After five days of tests, an MRI scan confirmed significant brain damage and the medical team recommended taking him off life support,” said Tom. “Myself and Alfie’s mummy, Charlotte, prepared ourselves, and his two sisters – Sofia, (four) and Alicia (two) to say goodbye.”

It was there, in Leicester, Alfie’s family were introduced to Gemma Lewis, one of our Clinical Nurse Specialists. Working alongside the NHS team and other colleagues at the hospice, Gemma was able to support the family, and help them make treasured memories, by providing the skills and services of Rainbows within the hospital setting.

“We were very grateful that Gemma was there to help us, especially with memory making,” said Tom. “Doctors advised Alfie could survive for several days, but with his presentation, we were told to expect minutes maybe hours. His breathing apparatus was removed and we were “ready” to cuddle him for the last time.

“But as we held him close, he continued to breathe. We reached five minutes, then 30 minutes, then two hours and he carried on. As the hours rolled past, Alfie continued to hold on.

“Eight hours went by and the medical team linked up a drip to provide nourishment and fluids to maintain comfort. Then eight hours became 12, and then 24 and still he carried on.”

Slowly Alfie began to get stronger. His seizures receded, his heart rate normalised, his breathing strengthened and his blood pressure improved. But due to the significant trauma already experienced, Alfie was still considered end-of-life care.

After four days, Alfie was transferred back to Kettering General Hospital and his family were supported by Karen Parsons, our Paediatric Clinical Nurse Specialist for Northamptonshire.

Karen helped Tom and Charlotte to liaise with the Community Children Nursing (CCN) team and helped with Alfie’s Advance care planning, symptom management and medication. Visits from our Hospice at Home team, which included Music Therapy to record a heartbeat keepsake, were also put in place.

Two days later, Alfie was able to go home. Over the following few weeks Alfie stabilised, and he moved from end-of-life care to palliative care.

Alfie’s parents continue to be supported by our Family Support specialists in many ways, with Sofia soon to benefit from our Sibling Support services.

“While he is still considered Palliative, Alfie remains with us, fighting on,” said Tom. “He has started to grow and put on weight, with small improvements being noticed as the weeks progress. There is no timescale on how long he will survive, but doctors are now talking months not hours and days.

“Rainbows has been an incredible support to us and continues to be so. No-one ever expects to have such difficult conversations, and the continued support provided by the Rainbows’ Nurses throughout has helped enormously. Whether it’s arranging for memories to be made – such as taking Alfie for a walk in the pram whilst in ITU, casting hand and footprints or attending medical appointments, or taking notes and helping to interpret the jargon. The team around us have always been on hand to provide advice, guidance and act on our behalf.

“From the initial news to now ongoing palliative care – the team at Rainbows have supported us every step of the way – and we will be forever thankful for their help in enabling the quality time we have enjoyed as a family.

“As a thank you, I wanted to raise funds to help them help other families like ours. Anyone who knows me, knows I’m always up for a challenge. Seeing what Alfie has overcome to this point, and the strength of my wife and children, I wondered if I could do something to represent the challenges they’ve overcome.

“Whilst really climbing Everest involves skills I don’t possess, and significant financial backing, I thought about climbing a UK mountain an equivalent number of times. Having climbed Snowdon before with Charlotte, it was the natural choice.

“I wanted to make sure anyone else going through something similar could benefit from the help, support and guidance we as a family have received. I do hope people will support me.”

To sponsor Tom, visit justgiving.com/page/rainbows-for-alfie