Girl’s giant heart tumour shocks city medical staff
Amid worrying and unsettling times, the Herald shares a series called Stories of Hope. It’s about resilient Kiwis who have overcome hardship in a bid to help inspire others during times of darkness. Health reporter Emma Russell reports
Alittle girl from Kaita¯ia wearing pink Mickey Mouse pyjamas and an infectious grin has won an extraordinary battle which nearly claimed her life.
Two weeks into lockdown, doctors at Auckland’s Starship children’s hospital were amazed 6-year-old Jahdae Gray was still alive when they discovered a golf ball-sized tumour inside her heart.
Yesterday, on the last day of level 4 lockdown, the “bubbly, energetic and outgoing” fighter was being discharged from hospital to be reunited with her loving parents and baby sister.
Jahdae’s mum, Aneta Hunt-Brown, wanted to share her family’s story to encourage other parents with sick children not to give up hope, even with the added stress of Covid-19.
Like many New Zealanders, Hunt
Brown expected to spend lockdown at home surrounded by her family.
But on April 8 Jahdae woke up vomiting. Hunt-Brown took the little girl straight to their local doctor.
“The doctor could see her heart beating fast through her chest. It was doing 240 beats per minute.”
The average heart rate for children aged 5 to 12 years is between 80 and 120 beats per minute.
Jahdae was rushed to Kaita¯ia Hospital emergency department for further testing, then transferred to Whanga¯rei Hospital before being flown to Starship’s paediatric intensive care unit.
“It was terrifying. She was pale and couldn’t walk — nobody wants to see their child go through that.”
Initially, Jahdae’s doctors thought she had a blood clot outside of her heart.
But after medication failed to lower her heart rate to a healthy pace she underwent open-heart surgery.
“It was only when they opened her heart up that they found the tumour the size of a golf ball.
“They were baffled as to why she already had survived this long with a tumour of that size . . . they reckon it had been there for the past six months.”
The tumour was removed and Jahdae was later diagnosed with tuberous sclerosis — a rare multi-system genetic disease that causes tumours, or growths, in the brainO¯ and other vital organs.
“For three days after surgery she wasn’t talking, walking or eating — she was traumatised from surgery.”
Despite her tumour being removed, her heart was still struggling to find a healthy pace, so the decision was made for Jahdae to undergo a second operation to insert a pacemaker, which will need to be changed every five years.
Jahdae still has a long road to recovery ahead and will remain in a Auckland hotel about 10 minutes from the hospital for another week due to risk of infection.
Her family and friends have been blown away with her bravery and strength.
“She is the most incredible 6-yearold I know.”
A Givealittle page has been set up to support Jahdae’s wha¯nau through their hardship, and has raised nearly $7000.
“Financially, emotionally and physically it’s taken a huge toll on our family but we are so grateful to have so much love and support.”
Hunt-Brown wanted to make a special mention to her nana, Kiri Brown, who had generously looked after their 6-month-old daughter, Taevyn, while she and partner Tyron had been back and forth visiting Jahdae.
“She is the most amazing woman and I don’t know how we would have coped without her.”
She was also grateful to Sacha Williams, the principal of tu¯ru School which Jahdae attends, who created the Givealittle page.