A Sydney mother has detailed how a seemingly insignificant symptom led to her eight-year-old’s daughter’s entire life changing in a terrifying instant.
When Leah’s daughter Jada developed a swollen, distended stomach, she took her to the GP thinking she was just constipated.
She came away from the appointment with a referral for an ultrasound and encouraged her daughter to drink more water.
But, during that time, Jada’s stomach grew larger and kids started to tease her, claiming she was pregnant.
When Jada’s ultrasound appointment finally came five days later, immediately, Leah knew she and her daughter were in for a lot more than she initially thought.
“The technician’s face practically went white and he told us that we needed to go straight to our GP,” Leah told news.com.au.
“It was late on a Friday afternoon and I remember saying to him the GP’s office was closing soon and I wouldn’t make it.
“He replied with, they are not waiting for you.”
Back at the doctor’s office, Leah was told her daughter had developed ascites – when fluid collects in spaces in your abdomen.
The pair were sent straight to hospital where a cardiologist and gastroenterologist met the pair and began conducting tests of Jada to determine if her heart or her liver were the issue.
The tests showed it was Jada’s heart, and she was placed in intensive care and given medication to drain 5-liters of fluid from her stomach.
“I remember thinking the whole time, why are we in the ICU,” Leah said.
“These other poor children are unconscious, one young teenager had been brought in via CareFlight with an aneurysm.”
After two days, Jada was briefly discharged with the family under strict instructions to return on Monday morning to speak with a specialist.
It was during that meeting Leah was told her little girl had a rare type of heart disease called restrictive cardiomyopathy, which is when the chambers of the heart become stiff over time and makes it harder for the heart to fill with blood.
Jada would need a heart transplant in order to have an active life.
Journey to a new heart
“We couldn’t wrap our own minds around reality,” Leah said.
“Jada was feeling the best she had ever felt after being placed on diuretics and aspirin.
“In her world, nothing was wrong with her.”
For the next six months, Jada was given medication to keep her stomach drained and every three weeks had to undergo echocardiograms and blood tests before meeting a pediatric hearts team in Melbourne to see when Jada would need a transplant.
Leah hoped it would be a few years but, within a week, Jada had to be added to the transplant list immediately.
It was a long six months before the family heard any updates on Jada’s new heart. Finally, one public holiday, when Leah was home with Jada, her three other children of her, a cousin and her parents of her, the call came.
Leah was told to get Jada to the airport as soon as possible and flight details would be worked out but the time they arrived.
“Within two hours we were in Melbourne sitting in the room and talking with Jada’s surgeon,” Leah said.
“We signed consent payments and before you knew it, I was kissing my daughter’s forehead as she fell unconscious on the operating table.”
While Jada was in surgery, Leah and her husband walked the cold streets of Melbourne in a daze unsure of what would happen.
When they could finally see Jada, Leah said she wasn’t prepared for the sight of her daughter laying on the bed with countless tubes attached.
After two long months in Melbourne, Jada was able to come home and the family was reunited.
“Since, Jada has had to endure three-monthly echocardiograms, six to 12-weekly blood tests, and just recently underwent her ninth heart biopsy where the results returned as zero rejection for the first time,” Leah said.
Wishing for a friend
For the last four years, the family has been thankful every day to Jada’s heart donor and their family.
But following her transplant, the now-12-year-old struggles with post-traumatic stress disorder and immune issues.
During her order, Jada was eligible for Make-A-Wish, so that she had something positive to focus on.
Originally, she wanted to go to Queensland but Covid restrictions meant that it was nearly impossible.
As the family’s personal lives began to shift with Leah and her husband separating, Jada decided to make her wish for a best friend.
“She researched Sphinx cats and realized that they also can carry a gene responsible for cardiomyopathy and they have annual echocardiograms,” Leah said.
“When Jada asked Make-A-Wish they made the journey possible, it truly gave Jada something positive to focus on.”
So, Penny entered Jada’s life.
Leah attributes some of her daughter’s health successes to the cat.
“The experience allowed Jada to be a kid, to use her imagination and wish big – something sick kids just miss out on the majority of the time.”
Make-A-Wish is currently holding it’s Bake-A-Wish fundraiser
.