Jahdae Gray, 6, has won a battle that could have claimed her life. Photo / Supplied
Jahdae Gray, 6, has won a battle that could have claimed her life. Photo / Supplied
HOPEstories
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.
A little girl from Kaitaia wearing pink mickey mouse pyjamas and aninfectious grin has won an extraordinary battle which nearly claimed her life.
Two weeks into lockdown, doctors at Auckland's Starship Hospital were amazed 6-year-old Jahdae Gray was still alive when they discovered a golf ball-sized tumour inside her heart.
Today, on the last day of lockdown, the "bubbly, energetic and outgoing" fighter is 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 trying to create happy memories during unsettling times.
But on Wednesday April 8, her daughter Jahdae woke up vomiting. Hunt-Brown knew something wasn't right so took Jahdae straight to their local doctor.
Aneta Hunt-Brown with her 6-year-old daughter Jahdae, who is recovering after multiple surgeries at Auckland's Starship Hospital. Photo / Supplied
"The doctor could see her heart beating fast through her chest. It was doing 240 beats per minute which is extremely fast."
Jahdae was immediately rushed to Kaitaia Hospital emergency department for further testing on her heart. The following morning, she was transferred to Whangarei Hospital before being flown to Auckland Starship Hospital's Paediatric Intensive Care Unit (PICU).
"It was terrifying. She was pale and couldn't walk - nobody wants to see their child go through that."
Initially, her doctors thought she had a blood clot outside of her heart but after medication failed to bring her heart rate down to a healthy pace she was taken in for emergency 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."
Jahdae up walking with a grin after surgery. Photo / Supplied
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 brain 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.
An X-ray of Jahdae's pacemaker. Photo / Supplied
Jahdae still has a long road to recovery ahead of her and will remain in Auckland - at a 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-year-old I know."
A Givealittle page has been set up to support Jahdae's whanau through their hardship, and has raised nearly $7000.
"Financially, emotional 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 her 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, who is the principal of Oturu School which Jahdae attends, and who created the Givealittle page.
