Twenty-five years ago a little girl received a life-saving heart transplant, now her mum is urging all recipients to join them. Catherine Scott reports.
Twenty-five years ago Kerry Morrison was warned her seven-year-old daughter would not survive unless she received a heart transplant.
Now her daughter Lynda is celebrating 25 years of her heart transplant and Kerry is organising a celebration in Harrogate to which all local organ recipients are invited.
“We had moved our young family up to Yorkshire from Kent in April 1994. Lynda was just seven,” recalls Kerry from Harrogate.
“During that summer term Lynda was being sick, with no other obvious symptoms. A number of visits to the surgery showed no reasons. As a child with mild cerebral palsy, she was referred to the Child Development Clinic in early August. There a chance X-ray showed an enlarged heart. She was sent straight to the-then Killingbeck hospital, Leeds.
“We were told that there was no chance of her heart recovering. The next day we were told that a heart transplant was our only option.”
Back then the nearest heart transplant unit was at the Freeman Hospital, Newcastle and they would need to agree to Lynda being accepted.
“It was said that her life might be extended by 10 years and the quality of life might not be good. The team at Newcastle assessed and accepted Lynda and gave us a bleeper to keep with us constantly.”
Lynda was sent home and for two months they waited for a life-saving donor heart to become available.
Two potential donor hearts found to be unsuitable. In early November Lynda’s condition started to deteriorate and she was taken back hospital in Leeds.
“She was deteriorating rapidly and we were told that there was little time left,” says Kerry.
Lynda’s name was moved to the urgent European list and on the night of November 19 they received a call to say a heart had been found in France.
Lynda was rushed up to Newcastle by ambulance. The surgery took seven hours through the night.
“Her donor heart had been flown over from France, from Amiens. This is all that we know. One of the roles of a Transplant Co-ordinator is to be an intermediary. Our letter of gratitude was translated by a friend but the family did not reply,” says Kerry.
Paediatric heart transplants were, and still are, far less frequent than transplants for adults. In 1987 the Freeman team achieved the first successful infant heart transplant so saving the life of Kaylee Davidson, then aged four months. From a total of 1,545 heart transplants performed at the Freeman since 1985, just 168 of these were for children.
Over the last 25 years Lynda has made frequent trips to Newcastle, which meant in the early days family and friends rallying round to help look after her three sisters.
“Managing the frequent trips to the Freeman and family commitments were only possible with the wonderful support friends, neighbours and members of St Mark’s Church. With the immunosuppressant tablets we packed travelling, holidays, camping etc became possible again. We were determined that Lynda and her sisters would live life to the full. It is amazing to think that donated heart is still beating 25 years on,” says Lynda.
There have been highlights such as numerous medals at the World Transplant Games and in 2000 the Make a Wish Foundation granted Lynda’s wish to see Ian Thorpe swimming in the Olympics in Greece.
But there have been further difficult times as well.
Twelve years ago Lynda’s kidneys started to fail due to the years of medication. Lynda stepped into donate one of her kidneys to her daughter in 2006.
Next year the law around organ donation is changing in England and Scotland. From spring 2020 in England and autumn 2020 in Scotland, all adults will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate or are in one of the excluded groups. This system was introduced in Wales in 2015.
In the lead up to the change in law, NHS Blood and Transplant is urging families across England to talk about their organ donation decision, with the campaign message ‘Pass it on’.
Around 6,000 people across the UK are currently waiting for an organ transplant. Lynda hopes the event such as the Gift of Life Celebration will raise awareness for the needs for vital organ donation.
“Over the years we have marked the anniversary of Lynda receiving a donor heart in different ways, sometimes with a party, with a trip, with a fund raising event or just within the family.”
“But this year being the 25th anniversary of that extraordinary night, we as a family have been inspired to organise a Gift of Life celebration that will provide an occasion for transplant recipients and living donors to spend a morning together and share their stories.
“We hope it will raise awareness of how the gift of an organ and the skill of the doctors, can give a wonderful, second chance of life for so many people. I have been looking for a way to say thank you for the gift of an organ. Organ donation saves and transforms countless lives every day. I hope that reading about our Celebration will encourage conversations between relations and give confidence to donate organs should that occur. Individuals’ positive views on organ donation are sometimes overruled at the time of death by family members as discussions have not occurred.
“Also I would like this celebration to be a way to say thank you to the staff of the NHS. The staff who work in our hospitals, often in traumatic and challenging situations, together with staff deeply involved in researching better treatments and methods.”
Have you or someone you know had an organ transplant? If so, then you are warmly invited to a Gift of Life celebration to be held at The Mercer Gallery in Harrogate on Wednesday November 20.
The special programme of events will begin with a reception at 10.30am at The Mercer Gallery. Here those who have had life-saving transplant surgery, their families and friends can meet one another and share their stories over coffee and refreshments. They will then be invited to take part in a celebratory walk in Valley Gardens followed by lunch at St Mark’s Church.
From spring 2020, organ donation in England will move to an ‘opt-out’ system. You may also hear it referred to as ‘Max and Keira’s Law’.
This means that all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups.