NUH offers ventilation care for kids at home

Mr Syahrunizham (left) using the ventilation machine at Tan Tock Seng Hospital. With him are his mother, Madam Azizah, and TTSH's respiratory therapy manager, Ms Anura Peters.
PHOTO: NUH offers ventilation care for kids at home

SINGAPORE - The National University Hospital (NUH) has started to formally offer home ventilation services for children - a move which will allow young patients to be treated in their homes and, also, free up precious bed space in hospitals.

With this, patients need not go to the hospital even for routine check-ups, which could be as frequent as once a month.

The portable ventilator - a laptop- size machine connected to a tube - helps breathing by delivering air to the lungs.

Patients needing ventilators mostly suffer from muscle or nerve disorders that make it difficult to breathe without help.

Though there are relatively few such patients in Singapore, their impact on hospital capacity can be great.

"One ventilator-dependent patient can take up a bed for a year," said Dr Chan Yeow, director of TTSH's home ventilation and respiratory support service. "In that time, we can look after 30 to 40 other patients."

He estimates there are 380 to 500 such patients in Singapore.

Tan Tock Seng Hospital (TTSH) and KK Women's and Children's Hospital (KKH) offer similar programmes, started in 2009 and 2001 respectively.

Earlier this year, The Straits Times reported on a severe hospital bed crunch, which saw patients in several public hospitals housed in corridors. The issue was even raised in Parliament.

Providing patients with regular home support is important for avoiding long hospital stays, said Associate Professor Daniel Goh, the head of NUH's department of paediatrics.

"It's better if we can treat them earlier in the home," he said. "Otherwise, by the time they come in, they're usually quite sick."

Patients are generally visited by hospital staff every one to three months, depending on their conditions. The staff also teach family members how to care for someone with respiratory failure.

TTSH's programme is part of the National Healthcare Group's community outreach efforts and has about 80 adult patients.

At NUH, more than 40 ventilator- dependent children "would benefit from or require home care", said Dr Thong Wen Yi, who heads the programme. "We have in the past visited some of them on an ad-hoc basis. But we do not have the resources to do home care visits for all of them."

It is rolling out its programme in stages, starting with patients with more severe conditions and are more difficult to transport.

"Transport is cumbersome and relatively costly for parents," explained Prof Goh. "And sometimes patients can get destabilised."

Patients either buy or rent ventilation machines, which cost $5,000 to $16,000. Hospitals typically advise families on the types of financial help available.

Doctors say besides freeing up much-needed bed space, keeping patients at home also helps keep them healthy. "In hospital, you can get a lot of cross-infections," said Dr Chan, referring to infections caught from other hospital patients.

TTSH patient hooked to machine every night

Three days after he turned 22 last year, Mr Syahrunizham Zainal was admitted to hospital and put on a ventilation machine.

Having had trouble breathing several days before, he had expected this to happen.

"When I was sleeping, I couldn't breathe, and I kept waking up," he said. "I was looking forward to my birthday party but I didn't know if I had the strength."

A year later, he has to be hooked up to the ventilation machine for eight hours every night as he sleeps, and sometimes for a few hours in the afternoon.

He was diagnosed with muscular dystrophy at age three. The inherited condition causes his muscles to progressively weaken with age.

By 10, he was wheelchair-bound. He had to switch schools because the one he was in then was not wheelchair-friendly.

Mr Syahrunizham is one of the youngest patients on Tan Tock Seng Hospital's home ventilation programme, and he does not let his condition get him down. He sings and swims.

He played boccia for Singapore in last year's Asian Youth Para Games. Boccia is a game requiring players to throw balls as close to a target as possible.

He works as a Web designer at the Muscular Dystrophy Association. "I wanted to do something productive with my time."

His mother, Madam Azizah Ahmad, has not had an easy time of it. Her oldest son - eight years Mr Syahrunizham's senior - also suffered from muscular dystrophy. He died of the condition in 2003.

"During his time, he wasn't introduced to this machine," she recalled. "It was mentally quite difficult to go through."

She encourages her remaining son to lead as independent a life as possible.

"I take it as though we are all normal," said Mr Syahrunizham, who has two older sisters. "It helps me to see myself as a normal person."

This article was published on April 23 in The Straits Times.

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