Doctors cure baby’s rare medical condition with help of private jet and specialist scans

Doctors cure baby’s rare medical condition with help of private jet and specialist scans


April 25, 2019 10:33:08

Every parent hopes to give birth to a happy, healthy baby — but for Nicko and Trac Hoang, it would be a gruelling four months in hospital until they could take their newborn home.

Key points:

  • Ryder was diagnosed with a rare form of hyperinsulinism at four months old
  • It is found in one in 50,000 newborn babies
  • Ryder had to be flown to Brisbane for specialist scans which provided crucial information on treatment

Ryder Hoang was born at Ashford Hospital, in Adelaide, in October 2018, but soon after his birth he started showing signs of having abnormal blood glucose levels.

Unsure of what was wrong, his parents were unable to take him home.

“It was quite challenging; everybody wants the perfect child, the perfect delivery and all that, so when we had something come that wasn’t perfect it definitely took us back a little bit,” Mr Hoang said.

“By about week three he had outgrown the little basinet that they had at Ashford because he was so big.”

“They were not prepared for such a big baby to be there for so long.

“But he couldn’t go home because they couldn’t figure out the problem, he wasn’t getting any better.”

At four weeks, Ryder was transferred to the Women’s and Children’s Hospital (WCH) where he was diagnosed with a rare form of hyperinsulinism.

It was the first time the hospital had treated a baby with this form of the disease.

WCH paediatric endocrinologist Elaine Tham said the disease — which is described as the opposite of diabetes — is found in just one in 50,000 newborns.

“Congenital hyperinsulinism is a condition where the pancreas over-produces insulin — you can’t switch off your insulin production so the blood glucose levels are always low,” Dr Tham said.

“With a baby, if their blood glucose levels are low all the time then they can be drowsy or not feed well or have a seizure or be unresponsive, so if that happens repeatedly that can lead to brain damage.”

Ryder flown interstate for specialist scans

After failing to respond to medication, Ryder underwent genetic testing which showed he had inherited a gene mutation from his father which further complicated his rare condition.

WCH doctors decided the only way forward was for the four-month-old to receive specialist scans only available interstate.

SA Health and MedStar organised a private jet to fly Ryder and his parents to the Royal Brisbane and Women’s Hospital to receive the scans.

The results were then interpreted by staff at the WCH, the Royal Brisbane and Women’s Hospital, the Queensland Children’s Hospital and the Children’s Hospital of Philadelphia.

SA Health paid for the $200,000 trip and provided the specialist team with the information they needed to operate on Ryder’s pancreas.

WCH paediatric surgeon Sanjeev Khurana — who successfully removed a legion from Ryder’s pancreas — said it was his first time ever carrying out the rare surgery.

“We were really relieved after the surgery once we knew that his symptoms were beginning to improve and we had confirmation that the lesion had been removed,” Dr Khurana said.

Since receiving the surgery in January, Ryder has been cured of his condition and now only has to have general health check-ups like any baby would.

Mr Hoang said he and his wife were grateful to WCH staff, SA Health and Medstar for saving their baby.

“Ryder is a happy, healthy baby, developing quite well,” he said.

“Besides the scar from having a little bit of his pancreas removed he would not have known this has happened to him.

“He will just grow up as a normal baby with no problems at all.”













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