What began as a routine checkup after it was noticed that the baby’s head was growing abnormally ended with the discovery of a massive tumor growing in the brain of an 11-week-old boy.
Brooke, 37, and Ollie Carter, 34, had to face the horror news after welcoming baby Hugo into the world when they settled into their Lennox Heads home in northern NSW.
Hugo’s newborn nurse made the alarming discovery during a routine checkup on Sept. 14.
Ollie and Brooke Carter have revealed how a routine checkup on their baby Hugo led to a massive battle with an aggressive cancer that saw him undergo months of chemo and now they’re hoping for an experimental drug (pictured Brooke and Ollie holding baby Hugo)
The discovery came after the 11-week-old started vomiting and was rushed to a GP where they said the swelling was likely caused by a build-up of fluid in the brain (Picture: Hugo)
Young Hugo’s head circumference grew rapidly, and ultrasound revealed that the swelling was a buildup of fluid in the cavities deep in the brain.
He had a golf ball-sized mass in his brain, which stopped the fluid from draining, and he was flown to Queensland Children’s Hospital for treatment.
Hugo underwent several surgeries to take some pressure off his brain so doctors could biopsy the mass.
After the biopsy, he was diagnosed with a grade four atypical teratoid rhabdoid tumor, a rare, malignant and aggressive tumor that grows in the central nervous system.
The ultrasound at Lismore Base Hospital revealed that the baby had a golf ball-sized mass in his brain that stopped the fluid from draining. He was flown to Queensland Children’s Hospital for treatment (Photo: Hugo’s brain ultrasound)
Over the next three weeks, Hugo spent a week in intensive care and had three brain surgeries.
Only about 60 babies are diagnosed with ATRT each year around the world and only 18 reported cases in Australia.
Survival rates are so low that the couple said Queensland Children’s Hospital had never treated a baby with the tumor who survived treatment.
Friends of Ollie and Brooke have one GoFundMe to help with expenses and to support the family financially while they are at their baby’s bedside.
“Our hearts are broken, but we have found strength in Hugo’s courage,” Ollie and Brooke wrote on the fundraising page.
“He’s done everything we’ve asked of him and has always been so strong.”
Baby Hugo started his chemotherapy a short time later and things only got worse when he contracted rhinovirus – a common viral infection – which left him with a constant fever for two weeks.
The couple received good news for the first time in December: the tumor had shrunk by 80 percent.
Hugo was diagnosed with a grade four atypical teratoid rhabdoid tumor (ATRT), a rare, malignant and aggressive tumor that grows in the central nervous system
They were told his best chance of survival was surgery, chemotherapy and radiation.
“Unfortunately, radiation is not viable given Hugo’s age and his growing brain, and the tumor is still inoperable due to its proximity to the brainstem,” Ollie and Brooke wrote.
“ATRT tumors are rare and aggressive and, even if completely removed, have an 80 percent chance of coming back in the first two years after treatment.
“We wouldn’t inflict this harsh treatment on him if we didn’t have the highest expectations.”
Hugo then underwent three 40-day rounds of chemotherapy at three times the toxicity he originally had while suffering stints in intensive care, seizures and infections.
Ollie and Brooke celebrated the six-month anniversary of their hospital stay on April 4 by celebrating Hugo’s completion of his treatment.
“Hugo fought so hard; the most brutal fight — five grueling rounds of chemotherapy (with toxic drugs made for adults, not small babies or children), three of which were high-dose rounds interrupted by persistent infections, seizures and time in intensive care,” the couple said.
“It was scary, especially knowing that some babies died during the same treatment. While it was all necessary to save Hugo’s life, the pain he endured is hard to reconcile.”
Only about 60 babies are diagnosed with ATRT each year around the world and only 18 cases have been reported in Australia. Queensland Children’s Hospital has never treated a baby with the tumor who survived treatment
The tumor shrank by 98 percent after chemotherapy, but the remaining two percent was resistant and if left unattended, Hugo would die within months.
So now the couple has one last option to pursue, a trial drug that aims to target the remaining tumor cells and prevent them from multiplying.
“We know that Hugo is still there, smiling and happy, is our miracle. He has done remarkably well. We celebrate his courage and achievements every day,” they said.
“We are optimistic that with this trial drug we can continue to hope for our miracle as we focus on Hugo’s quality of life.
“We want to take our little boy back to Lennox and suck him up. He lived in a hospital for six months.
‘It’s time for sunshine, grass and walks with our dogs – making the best memories and showing Hugo how beautiful life is.’
The couple also wants to draw attention to the rare cancer by sharing their son’s recovery on an Instagram account called My sun warrior.
An Australian child dies of brain cancer every nine days, according to the Children’s Brain Cancer Centre.
“Despite progress in other childhood cancers, survival rates for brain cancer have progressed little over the past 30 years,” the site states.
After chemo fails to eradicate the entire tumor, the couple have one last option to pursue, a trial drug that aims to target remaining tumor cells and prevent them from multiplying