My five-year-old daughter has had ten heart surgeries and is waiting for a life-saving heart transplant
It was at Hollie Brown’s second prenatal scan in 2020 that she learned something was amiss.
“The sonographer said she couldn’t see all four chambers of the heart. She said it might be down to the way the baby was positioned,” Hollie says.
But further scans and a referral to the foetal medicine team in Birmingham revealed that baby Poppy had hypoplastic right heart syndrome, a congenital heart defect.
“We were worried. And it was a really weird time, with Covid. Everything felt very disconnected, and lonely,” Hollie, from Pembrokeshire says.
Poppy was born by C-section in June 2020, in Coventry, when the hospital was in the grip of pandemic restrictions.
Hollie’s husband Ben was not allowed in the delivery suite and Poppy was immediately whisked off to neonatal intensive care where doctors prepared her for surgery.
At just three days old, Poppy underwent her first open-heart operation. Hollie and Ben were told she had less than a five per cent chance of survival and, late at night, were asked to sign consent forms to enable surgeons to put a shunt in her heart and widen her arteries.
“We were just shell-shocked. It was terrifying. Just a horrible feeling. We held her quickly just before, in case we wouldn’t get another chance. But she was all wired up so we couldn’t get very close,” Hollie, 40, says.
It was the longest six hours of the couple’s life, but miraculously Poppy survived. They had their first proper cuddle on Father’s Day and were able to take her home within a week.
But four months later, Poppy needed another open-heart surgery, the second of many.
Ever since, life for the Brown family has been a merry-go-round of scans, clinics appointments, hospital stays and careful routines. Hollie describes it as a “roller coaster you can never get off”.
Sisters Maisie, 14, and Heidi, seven, have had to adapt to life on the move, living out of suitcases between Coventry and Birmingham and spending days at the Ronald McDonald House family accommodation in the hospital.
“They’ve endured a lot of late-night emergency trips to the hospital. They’ve lived out of the back of a car with no proper meals and no routine. But they’ve been really good with it,” Hollie says.
Each trip back to hospital brings new challenges. In January last year, Poppy faced her third open-heart surgery to increase her oxygen levels.
But hours into the operation, her circulation would not restart. “They said they were going to make the hole bigger and we just had to sit, watch and wait,” Hollie says.
Eleven and a half hours later, the news finally came: Poppy’s heart had responded. She was critical for 48 hours, then slowly regained strength. Doctors told the family to prepare for Poppy to spend months in hospital, but 13 days after the surgery, she was well enough to go home.
In total, Poppy has now endured ten surgeries and is now in surgical palliative care, enduring operations which will manage a condition which can’t be cured.
In the future, a transplant may offer hope, but another life would be required to save Poppy’s.
“We’re just hopeful that the results of this latest operation will last a long time,” says Hollie.
The family have had to find real strength to endure all the heartbreak and uncertainty of the last five years, finding comfort in each other and doing simple, every-day activities, eating together and taking nothing for granted. Ben volunteers for charity Heart Heroes, bringing together local families going through similar experiences.
And despite her health struggles and the resulting tiredness, Poppy is embracing her childhood, attending school for two hours a day and playing up like any other five-year-old would.
“She’s mischievous. And I don’t know why or where it came from, but she is obsessed with turtles,” says Hollie.
So in the midst of hospital visits and care plans, the family has learned to treasure simple joys, most recently taking Poppy to meet turtles thanks to charity Rays of Sunshine, who arranged a visit to Plantasia Tropical Zoo in Swansea earlier this year.
Poppy spent a joyous afternoon gently stroking turtles, helping with their annual health checks and learning about their habitats.
“It was a lovely day. It was really nice to have a sense of normality. Poppy still talks about it all the time. It was great to have a day for her that was just about fun, and for her to be the centre of attention for the right reason. It was amazing as a family just to treat her, make her feel special”, says Hollie.
To help other children like Poppy become Ray for a Day visit raysofsunshine.org.uk/donate