She always looked out for others, even protecting them from bullies, so when UK-based Julie Allistone’s young daughter Jade started complaining of being ill she hoped it wasn’t anything too serious, the mother tells Colin Drury
A mother shares her painful story of losing her teenage daughter to a heart condition.
Julie Allistone’s nursing instincts meant she was under no illusion. She was well aware the chest pains her youngest daughter Jade had been suffering from could be serious. But on a bright morning, as Julie awaited the results of hospital tests along with the 11-year-old – an apparent picture of health – even she could have no inkling of the news that was about to turn the whole family’s world upside down.
“As soon as we walked in the doctor’s room, I knew it wasn’t good,” she says. “The whole atmosphere was wrong. We sat down and it was worse than I ever thought.”
Jade, they were told, had just months to live. The pains were being caused by a heart defect, called hypertrophic cardiomyopathy, which could result in her collapsing any minute. The rare condition – occurring when the heart muscle thickens and stops blood being pumped around the body – is so deadly that, for most people, the first time anyone has any idea they have it is when they suddenly die.
“It was utterly devastating,” recalls Julie. Jade, as it turned out, would defy doctors. Thanks partially to a heart transplant and partially to her own sheer determination to keep going, she lived for almost four more years. She passed away at her home in Eastbourne, on the south coast of England, just last month.
But before she did so, she met Professor Maha Barakat, who was representing Her Highness Shaikha Fatima Bint Mubarak Al Nahyan, Chairwoman of the GeneralWomen’s Union, Supreme President of the Family Development Foundation and President of the Supreme Council for Motherhood and Childhood.
The Shaikha’s generosity will offer hope to children in a situation similar to Jade’s in the future.
Jade was just nine years old when she first complained of chest pains. By that time, many of the characteristics that would define her were already in place. “She was always thinking of others,” says Julie, 57, a single mother who adopted the youngster and her older sister Dani, now 19, when Jade was just eight months old. Julie has one other child, 32-year-old Chloe.
“Jade never, even from an early age, put herself before anyone. She was always positive, always bright, with lots of friends. And she would always stick up for people. If anyone was being bullied at school, Jade would be the one to step in…
“She could sometimes be stubborn but she was growing into the kind of young woman any mum would be proud of. She was a joy to be around. I remember before she passed away she said, ‘There’s so much I want to do’ – get married, have her own children, become a teacher, and I think she would have done it too.”
Doctors initially said the chest pains were nothing to worry about but 18 months later, when Jade was 11, Julie – a nurse – saw her struggling while playing tennis.
“I remember seeing her leaning on her racket out of breath halfway through the game,” she says. “It was the exact same position I’d seen
patients suffering a cardiac arrest go into. They lean forward to relieve the pain in their chest.
“I went over to her and she said, ‘It hurts, Mum,’ and I remember just telling her, ‘Come on, we’re getting you to hospital’.”
This time doctors at Eastbourne District General in East Sussex found Jade had suffered an ischaemic attack, something that occurs when blood flow from the heart is disrupted. Further analysis – this time carried out at St Thomas Hospital in London – resulted in the devastating news that, without intervention, she had just months to live.
She had been diagnosed with hypertrophic cardiomyopathy, which is when heart muscle thickens around the lower chambers. Why exactly this happens or what causes it remains unclear but, over time, the thickened muscle blocks blood being pumped around the rest of the body.
“We were told she could drop down at any minute but that there was an operation that might keep her alive – a heart transplant. But then we were told that transplants could only happen if a donor with the right kind of heart was found. Jade was still a child so some adult hearts may have been physically too heavy for her. And even if they found one they thought her body would accept, there was no guarantee the heart would make it to the operating theatre in a condition that could be used. Even if it did, there were so many complications with the transplant itself, that there was a chance Jade might not pull through.
“It was agonising really. You’re suddenly in a sort of limbo, just hoping and praying that a heart is found and that it’s your child that gets it. And you’re hoping that in the meantime, she’ll be OK. You have no idea how long it will be, but you’re told not to leave the area and to be ready to drop everything and get straight to the hospital because, obviously, once they have a heart, the operation needs to happen straight away.
“How did Jade feel about it? I think she was relatively calm. We’d not really gone through the risks with her because she was so young. I told her that they were going to find her a new heart and after that she’d be able to play all her sports again like she used to, and I think she was just looking forward to that.”
In the end, it took just a few weeks from the diagnosis – and roughly two months after that tennis match – before a phone call punctured the silence in the house at 3am one day in February 2011. It was from London’s Great Ormond Street Hospital.
“They said ‘We have a heart for Jade’,” recalls Julie. “I was still half-conscious so all I said was, ‘Oh right, thank you’ and it was only
‘It was pure relief… When she first woke up and smiled at us, it was one of the best feelings’
as I was waking the girls up – Jade and Dani – that it really hit me what was happening.
“I went into Jade’s room and told her, and she said, in that way young people do, ‘Really? At 3am?’”
An ambulance picked them up within the hour.
“I remember when we got to hospital, and she was ready for theatre, I just said ‘We’ll be here waiting for you when you get out’, and I took a long look at Jade, praying she’d be okay.
“Dani and I sat in a café for a while, in a daze.”
The heart itself, they would later learn, had travelled fromWales – although no other details were given. The hours passed slowly until, at 3pm, medics arrived with good news. The eight-hour operation had gone well. Jade was in intensive care, and if she survived the next 24 hours, and then the next three months, there was a good chance she would live a normal life.
“It was pure relief,” says Julie. “We went to see her but she was unconscious for two days. When she first woke up and smiled at us, it was one of the best feelings.
“The funny thing was that she was always very proud of her scar, which ran right down her chest, almost from her neck.”
For three months after the operation, she had to be kept away from large groups of people because medicines designed to make sure the body didn’t reject the heart also weakened the immune system. Contact with minor colds and flu could have been deadly. As such she was kept out of school at first.
“But once she started going back… you can’t say things were ever normal because you have to be so careful for a year – she couldn’t do strenuous exercise or sport – and we still had regular doctors appointments, but things were looking up,” says Julie. “She was back to her old smiling self.”
But things had started to decline again by the time Jade met Prof Maha this year. The youngster was readmitted to Great Ormond Street in the summer, not long before it was announced that Shaikha Fatima was to give some Dh373 million to the famous hospital.
The money will go towards building the world’s first centre dedicated to paediatric research into rare illnesses. In essence, it will allow doctors to better understand how to
treat youngsters such as Jade.
“The most important work that we can undertake as a global society is to improve the health of future generations so that communities can thrive and grow,” Shaikha Fatima said at the time of the announcement. “To reach this goal, we must form collaborative partnerships that have the potential to benefit all children. We are honoured to support the mission and work of Great Ormond Street Hospital.”
The donation was given in recognition of the hospital’s ability to lead groundbreaking research, but also in acknowledgement of how it has provided treatment for children from across the globe – including some 750 from the UAE over the past four years.
The new centre is eventually expected to bring hundreds of clinical staff and researchers together, where they will see patients and access state-of-the-art laboratory facilities under one roof.
The gift, said Baroness Blackstone, chair of Great Ormond Street Hospital, was “truly transformative.
“This facility will be a centre of excellence for translational research and a beacon of hope for children with rare diseases around the world.”
Jade herself had been readmitted in June this year – almost threeand-a-half years after her transplant – when it became clear her body was rejecting the new heart. Early signs the operation had been a success proved a false dawn, and complications soon arose. Doctors discovered the teenager’s antibodies were attacking the organ, one of the common risks involved in the process. A spell of chemotherapy didn’t solve the problem. By this summer, it had become clear the new heart was now damaged beyond repair. The family was told she’d need a new transplant.
“Because it was her second time, it made the chance of finding another heart so much harder,” says Julie. “The doctor told me that there were at least 250 people ahead of her, and they hadn’t had a new heart come in for 10 weeks. It was bleak.
“By that point, I’d prepared myself for the worst. There were no other options. Jade, who was now 15, needed a new heart and there weren’t enough coming in. It was heartbreaking. We were helpless. Of course we wanted to fight but there were no other avenues to go down but wait.
“Jade remained so positive throughout, though. She never gave up hope.”
Apart from occasional visits home – including to attend a friend’s birthday party while in a wheelchair – she was now largely kept at Great Ormond Street Hospital. This was why, in July, she got to meet Prof Maha, who was visiting to mark the occasion of the donation announcement.
“We were told a few days beforehand that there was a VIP coming and would we meet her,” remembers Julie. “Well, Jade always liked meeting new people.
“When she arrived they chatted about why she was visiting the hospital and then about Jade’s illness and how she found the hospital.”
And the professor was just as honoured to be there. “For more
The hospital has provided treatment for children across the globe, including some 750 from the UAE
than 160 years, Great Ormond Street Hospital has provided children with the medical care they have needed, and this new centre will be an extension of this essential work,” she said afterwards. “We are indebted to the people of Great Ormond Street Hospital who dedicate themselves to helping thousands of children every year who are suffering from life-threatening and life-limiting conditions.”
Julie, too, is indebted to the hospital. The dedication of doctors extended Jade’s young life by almost four years, always treating the family with the care and courtesy they needed.
But medics could do nothing on August 6. While back home in Eastbourne for an indefinite period, the 15-year-old suffered a cardiac arrest and passed away.
“She came back from Great Ormond Street on the Friday,” says Julie. “The nextWednesday morning we were going up to the hospital for an out-patient appointment when she had a cardiac arrest… I managed to resuscitate her but she had another when the ambulance service and emergency doctor got there. They couldn’t resuscitate her. The entire family is devastated. It feels unreal still.”
Tributes have since poured in on social media – including an emotional YouTube video showing photos of the youngster – while Jade’s funeral was held in Eastbourne on August 29. Friends were encouraged to write messages on her coffin.
A spokesman from her school, Ratton School, also paid tribute: “She was a very popular girl with both students and staff, who didn’t allow her condition to stand in the way of her commitment to her studies and friends… The courage with which she faced her everyday life was a constant source of inspiration to us all.”
Indeed that inspiration has now led more than a dozen of Jade’s friends to themselves go on the organ donor register. And for that, Julie is thankful. Because they are refusing to let Jade’s death be in vain.
Jade was always positive and bright, says her mother With older sister Dani, also adopted by single mum Julie Dani and Jade on the beach in happier times
Jade with Dani and Julie
Prof Maha with Jade at the hospital