But just as they started dreaming about the day they would finally meet their baby boy, one ultrasound changed everything.
She walked into the appointment calm and smiling, but within minutes, the air in the room shifted.
The sonographer grew quiet, her eyes fixed on the screen.
Finally, she spoke.
“There’s… something on his arm. A mass.”
Jenaya’s heart dropped.
Doctors reassured her that it was probably a hemangioma, a benign vascular birthmark. But they couldn’t be sure. They referred her to a maternal-foetal medicine team, who confirmed that the mass appeared to be made up of blood vessels — though a rare childhood cancer called sarcoma was mentioned as a “very unlikely” possibility.
Despite their words, Jenaya couldn’t shake the fear growing inside her.
“Because of all the blood vessels in the mass, it was affecting his heart,” she recalls. “I kept wondering — could he die inside me, and I wouldn’t even know? Would I see a heartbeat at the next scan? Could it rupture and bleed out?”
For the next two months, she lived between ultrasounds, each one a test of patience and faith.
“I went in every two weeks, not knowing if I’d have to deliver him early or not,” she says. “It was agonising.”
Toby’s Birth
When baby Toby finally arrived, Jenaya felt a wave of relief.
He was breathing, crying — alive.
At first glance, she thought his arm didn’t look too bad. But when the chaos of birth settled and she held him close for the first time, she saw the truth.
“There were lumps, deep crevices, and hard patches. His upper arm was enlarged, and there was a solid mass on the back of his shoulder,” she says softly.
Still, Toby was perfect in every way. Jenaya promised herself she’d do everything to keep him safe.
A few weeks later, the family was referred to the Vascular Anomalies Clinic for further testing.
Over the following weeks, Toby underwent multiple scans and tests. The results seemed to confirm what doctors had first suspected — a
vascular anomaly, not cancer.
“They told us it looked benign,” Jenaya says. “We were so relieved.”
But something inside her still felt wrong.
Out of growing concern, she reached out to the
International Vascular Birthmarks Foundation in the United States, sending photos and medical summaries.
The response came quickly — and it shook her to her core.
“This is not an infantile hemangioma. This baby needs urgent testing.”
With the Foundation’s help, Jenaya contacted a radiologist at Westmead Hospital in Sydney. The next morning, he called her directly.
“He said, ‘I agree — this baby needs to be seen immediately. If you can get to Sydney, we’ll do a biopsy and start a treatment plan straight away.’”
Within days, Jenaya and Josh packed their bags and drove through tears, exhaustion, and uncertainty, holding on to one fragile hope — that they weren’t too late.
