TL.TOP STORY: When doctors saw a mass on Toby’s arm in the womb, his parents entered a long wait filled with fear, questions, and hope

I remember thinking, oh, it’s not that bad… we can deal with that.

– Jenaya, Toby’s Mum

Toby was still in his mother’s womb when doctors noticed he had a ‘mass’ on his arm. But it was to take many weeks before his parents would find out exactly what that mass was. 

Pre-diagnosis

Jenaya and Josh were excited when they found out they had their first baby on the way. The pregnancy was going well, and Jenaya planned to give birth at a birthing centre to keep things as ‘intervention-free’ as possible. 

One night at home, Jenaya had a minor fall. Although she thought nothing of it, her midwife suggested she get checked out. It was at this point, 28 weeks into the pregnancy, that an ultrasound revealed a mass growing on the baby’s arm. 

I went in for scans every two weeks, not knowing if I was going to have to deliver then or not.

– Jenaya, Toby’s Mum

‘They said it was probably a hemangioma, which is a type of birthmark, but that they were going to refer us to the MFM [maternal foetal medicine specialists] team,’ Jenaya recalls. The team confirmed the mass was most likely hemangioma, although sarcoma [a type of cancer] was mentioned as an ever-so-slight possibility. 

‘Because of all the blood vessels in the mass, it was affecting his heart. I was really stressed.  Could he pass away in my belly, and I not know?  Am I going to see a heartbeat at the next scan?  Could this mass just rupture and bleed out?  All these worries were going through my mind.’ 

Toby’s Birth

When Jenaya first laid eyes on Toby, she thought his condition wasn’t as bad as anticipated. ‘It was a couple of hours later, when the hustle and bustle had died down, that I got to hold him and really have a look,’ she says.  

‘There were patches and lumps and really deep crevices between them all. His upper arm was enlarged, and there was a hard mass on the back of his shoulder.’ 

Toby was referred to the Vascular Anomalies Clinic in Brisbane for follow-up in a few weeks’ time. 

Testing

A multitude of tests were done. When Jenaya and Josh went in for the results, they were told the scans suggested it was a rare type of ‘vascular anomaly’ – an abnormality of the blood vessels.  

‘I remember asking, “is it benign?  Could it be anything more?”, says Jenaya. ‘And they were like, ‘no, it doesn’t look like anything more sinister. It’s benign.’”  

While waiting for answers, Jenaya and Josh decided to reach out to the US-based International Vascular Birthmarks Foundation for advice. ‘This is not an infantile hemangioma; this baby needs urgent testing’ came the response. 

They said, ‘this is not an infantile hemangioma. This baby needs urgent testing.

– Jenaya, Toby’s Mum

The Foundation recommended a radiologist at Westmead Hospital in Sydney. Jenaya managed to contact a nurse there, who agreed to show photos and a summary to the radiologist.  

The next morning, the radiologist rang Jenaya directly. ‘He told me, ‘I agree; this baby needs to be seen immediately.  If you can get to Westmead, we’ll get a biopsy and a treatment plan straight away.’ 

Diagnosis

At Westmead, a biopsy was done. Jenaya and Josh also agreed to sign Toby up to the Zero Childhood Cancer (ZERO) national clinical trial, so detailed genetic testing could be done on his mass. 

When the biopsy results came through, Jenaya and Josh were taken to a private room where the news was delivered: Toby had ‘a malignant spindle cell neoplasm’ — cancer — and the oncology team was on its way. 

‘I remember going very still,’ Jenaya says. ‘I don’t think my brain could fully comprehend it.  Even now, I don’t know if I fully comprehended the fact that my baby has cancer.’ 

When the oncologist arrived, he explained he thought Toby had something called infantile fibrosarcoma, and more testing was required.