How a string of beads gave this Ipswich family hope
- Credit: The Canfer family
An Ipswich family has shared how a string of beads helped them through a difficult period in their lives when their daughter was fighting for her life in intensive care.
Melanie and Neil Canfer used Beads of Courage – a programme which saw them thread beads on a chain every night their baby daughter was in hospital - as a source of hope during an extremely difficult time.
Niamh, now six, needed specialist care in a neonatal unit at Addenbrooke's Hospital, in Cambridge, when she was born.
She was born with two very rare conditions: Tracheo-Oesophageal Fistula (TOF) which meant that she had a gap in her oesophagus, and CHARGE a genetic syndrome affecting one in every 10,000-15,000 live births.
As a baby, Niamh needed operations to treat various health complications.
It was in these early stages of Niamh’s life that the Canfer family were first introduced to Beads of Courage by hospital staff - a scheme which would document Niamh’s journey and recovery over the 10 weeks she was there.
Each bead represented a different aspect of Niamh’s journey.
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A yellow bead was threaded for every night in the Neonatal Intensive Care Unit (NICU), a red bead stood for when Niamh moved out of the incubator into a cot, and a smiling sun represented her first cuddle with her big brother.
Mrs Canfer explained why the Beads of Courage scheme helped her and her family remain hopeful.
She said: “As the one who sat next to her incubator most days not being able to do anything to help her, it helped me to take it day by day.
“And when it felt overwhelming and like she was never going to get out of there, to know that each day she was getting stronger because she was going through fewer of the horrible procedures and getting more of the achievement beads.
“It felt like something positive that I could cling onto whilst I was waiting,” she added.
Niamh now goes to mainstream school in Suffolk and receives help and support.
The family recently showcased the beads at the Power of Stories exhibition, in Christchurch Mansion.
For more information about Beads of Courage see here.