WATCHING adoringly as her two daughters play happily in the sunshine, Joanna Perry cannot believe how her fortunes have changed.
In the past nine years, she almost lost Lucie, 11, and five-year-old Isobel to the same potentially fatal heart condition.
Lucie, 11, and Isobel, 5, were saved from the brink of death by medics and the generosity of strangers[/caption]
Luckily both were saved from the brink of death thanks to the brilliance of medics and the generosity of strangers, whose donated hearts kept the girls alive.
Their case — where two siblings with the same potentially fatal heart condition had to be revived and then given heart transplants — is one of the rarest.
“It genuinely feels like we’ve won the Lottery — twice!” said Joanna, 43.
“My husband Phil and I have said our last farewells to both our girls, and both times we had our prayers answered.
The two siblings with the same heart condition were both given heart transplants[/caption]
“To have one last-minute call saying a donor heart had been found was incredible.
“To have it happen all over again shows miracles can happen.”
Nine years ago, Lucie suffered a massive heart attack.
She had to be shocked 11 times with a defibrillator and her heart did not beat properly for 52 minutes before she was finally fully brought back to life.
Lucie was then diagnosed with dilated cardiomyopathy (DCM), a condition where the heart becomes enlarged and cannot pump blood effectively.
She lay in Great Ormond Street Hospital (GOSH) clinging on in intensive care until, against all the odds, a suitable replacement heart was found in just a matter of days.
Initially medics could not get Isobel’s heart back into a natural rhythm[/caption]
The transplant was a complete success and she and her family returned home to restart their lives.
But seven years later, the family discovered they would have to go through the same horrific ordeal all over again with their then four-year-old daughter Isobel.
It began in November 2018 when, at a regular check-up, they got the bombshell news that the youngster had the same potentially fatal condition as her older sister — but a milder version that medics hoped could be controlled with medication.
But just a week later, she suddenly developed what seemed to be a bad tummy bug.
Joanna called GOSH and was told to bring her in if she was worried about it.
As a precaution, they booked a consultation for five days’ later.
Joanna and Phil pictured with Lucie and Isobel and their son Jude[/caption]
Joanna, a press officer from Great Bookham, Surrey, said: “By then Isobel was lying in bed crying, with a swollen, puffy, leg, so I rushed her to an out-of-hours GP.
“That doctor sent us to Epsom Hospital, where scans showed she was suffering massive heart failure.
“Suddenly my worst nightmare had come true.
“It just didn’t seem real or fair.”
Within 24 hours Isobel went into cardiac arrest.
Little Lucie’s heart did not beat properly for 52 minutes[/caption]
She said: “A huge team of medics rushed to her bedside to bring her back, just like Lucie,”
Joanna added: “It was like some horrific repeat of the nightmare we’d already lived through once, watching our second daughter clinging on to life while we just watched, helpless.
The medics could not get Isobel’s heart back into a natural rhythm, so they said she would need an external Berlin heart — a life-saving pumping device that takes over the work of one, or both, sides of the organ – to keep her alive.
But an ultrasound showed blood clots behind her heart which needed to dispersed first.
If they were not, she would suffer a massive stroke or fatal heart failure.
Incredibly, Isobel’s heart went back into a normal rhythm by itself, but the medics then spotted a bleed on her brain and operated immediately to save her.
She was then put in an induced coma.
‘COULDN’T EXPLAIN RECOVERY’
Joanna and Phil were told Isobel needed a new heart, but she could not be put on the transplant list until she was strong enough.
One of her lungs had collapsed, her liver was enlarged, she had pancreatitis, and was about as unwell as a child could be.
Doctors warned she might have paralysis due to the clot.
But incredibly two months after the operation Isobel woke up.
Joanna said: “My husband Phil sent me a video from hospital of Isobel waving and closing and opening her eyes.
“The doctors were staggered and couldn’t explain her recovery.”
A lifeline throughout their ordeal was the accommodation provided by the Sick Children’s Trust at Guildford House close to GOSH, so they were constantly near to Isobel while she was in hospital.
And their daughter recovered so well that, at the start of August last year, Isobel was put on the transplant list.
Just ten days later Joanna got the call that a donor heart had been found.
Joanna — who also has an eight-year-old son, Jude, with Phil — said: “I pulled over in the car and sat there, sobbing.
“My kids asked if I was OK, and I replied, ‘I’m more than fine! Your sister’s got a new heart!’, and they both cheered.”
Isobel recovered quickly with few complications with the transplant[/caption]
That transplant operation went well, and Isobel recovered quickly with few complications.
The family left GOSH on October 21 and went straight to The Children’s Trust in Tadworth, Surrey, for intensive physiotherapy, where Isobel recovered.
Their son Jude has also had scans for the condition but thankfully nothing was picked up.
Just before they left GOSH with Isobel, Joanna and Phil, 46, an electrician, received a letter from the donor family saying how glad they were to learn their child’s donor heart had saved a life.
“Writing my reply to that was the hardest thing I’ve ever done — you literally can’t express how appreciative you are for their kindness in a time of crushing grief,” Joanna said.
“At some point in the future it would be wonderful to meet them, for them to hold Isobel in their arms to feel their child’s heart still beating.”
Joanna also kept a journal of Isobel’s journey, which she is now turning into a book during lockdown.
And she is delighted that new rules on organ donation, brought in in May, will mean people now have to opt out of being a donor.
She says: “I hope my book will help Isobel understand what we went through and be helpful for other families going through what we did.
“Needless to say Phil and I are overjoyed about the recent legislation that means people must actively opt out of being an organ donor, so more lives like Lucie’s and Isobel’s are saved.
“Looking at both my girl’s scars on their chests is a constant reminder of how our family could have been so very different and how every day together is so precious. They are our little miracles.”
Joanna and Phil are very grateful that their girls’ stories had a happy ending but some kids are not so lucky due to a shortage of suitable donors.
Matthew Fenton, director of paediatric heart transplants at GOSH: “In my 17 years at the hospital, I can remember only a handful of cases like this, where siblings from the same family and with the same heart condition both received a life- changing heart transplant, making cases like that of the Perry family incredibly rare.
“At the moment we have 22 children waiting for a heart transplant at GOSH and, tragically as many as a quarter of those may not survive the wait because of a lack of suitable donors.
“One of the factors compounding this is that there is a shortage of suitable donors, making the search for a match very difficult.
“Sadly, the consent rate for paediatric organ donation is much lower than the overall national average for adults.
Joanna says she feels like she has won the lottery twice[/caption]
Most read in Fabulous
“This means that the number of children who would benefit from organ transplantation exceeds the number of donors.
“We’ve seen first-hand the immediate and life-changing impact when a child receives this incredible gift of life, even during this pandemic. And we must never underestimate the strength and generosity it takes for a family making this gift, at a time of unimaginable loss.
“So we remain hopeful, particularly with the organ donation law changing to opt-out, that more people will have the conversation with their families so that no opportunities for donation are missed.”
- Find out more about the work of the Sick Children’s Trust at sickchildrenstrust.org/donate.
The Sun’s Who Cares Wins
JOANNA and Phil Perry have nominated Lucie and Isobel’s doctor for a gong in The Sun’s Who Cares Wins awards, set up in 2017 to honour NHS staff, charities and volunteers.
The couple have put forward Dr Matthew Fenton, consultant cardiologist and transplant physician at London’s Great Ormond Street Hospital, in the Best Doctor category.
They first met Dr Fenton when Lucie was hoping for a heart transplant, and he further spotted that Isobel might have the same condition during one of Lucie’s routine check-ups.
The Perrys say Dr Fenton has been “by our side” throughout their whole ordeal. He continues to see both girls for their medical appointments.
There are now 11 categories in our awards, including Best Team, a new section for this year.
To nominate a health hero, go to thesun.co.uk/whocareswins.
GOT a story? RING The Sun on 0207 782 4104 or WHATSAPP on 07423720250 or EMAIL [email protected]