Strong enough to venture out after 18 years - thanks to home-care scheme

Vivian Goh, 37, has not left her house since she was 19. She suffers from spinal muscular atrophy, a condition that leaves her bedridden. In April, she left her home for the first time in more than 15 years to visit Madame Tussauds Singapore.
Ms Vivian Goh's condition, spinal muscular atrophy type 2, has kept her bed-bound and she had to shuttle between home and hospital for years. However, early medical intervention has helped her to sidestep lengthy hospital stays and allowed her to go
Ms Vivian Goh's condition, spinal muscular atrophy type 2, has kept her bed-bound and she had to shuttle between home and hospital for years. However, early medical intervention has helped her to sidestep lengthy hospital stays and allowed her to go on her first social outing in 18 years in April. The most recent outing on June 15 was a ride on the Singapore Flyer with her mother Ivy Yong.ST PHOTO: KEVIN LIM
37-year-old Vivian Goh, who has spinal muscular atrophy type 2, a condition that is characterised by progressive muscle weakness, and her mother Ivy Yong, 63, making their way past a void deck to a van that will take them on a rare outing: to the Sin
37-year-old Vivian Goh, who has spinal muscular atrophy type 2, a condition that is characterised by progressive muscle weakness, and her mother Ivy Yong, 63, making their way past a void deck to a van that will take them on a rare outing: to the Singapore Flyer. ST PHOTO: KEVIN LIM
Ms Goh has been cared for single-handedly by her mother since she was three. Her condition has deteriorated gradually throughout her life, and now she can only drink milk through a feeding tube. Phlegm has to be suctioned from her mouth and nose dail
Ms Goh has been cared for single-handedly by her mother since she was three. Her condition has deteriorated gradually throughout her life, and now she can only drink milk through a feeding tube. Phlegm has to be suctioned from her mouth and nose daily, and she is hooked up to an oxygen tank. But Ms Goh stays cheerful. She credits that to her always-smiling mother, who she calls her "idol".ST PHOTO: KEVIN LIM

Home-care scheme keeps patient in better health and lets her enjoy life outside home

For close to two decades, Ms Vivian Goh, 37, lived her life in her three-room flat in Bedok, and her second home, the hospital.

A neuromuscular disease confined her to her bed, and complications left her hospitalised for months at a time. "Even during Chinese New Year and Christmas, she was in hospital. We were at home very little," said her mother, Madam Ivy Yong, 63, a housewife who rarely leaves her side.

But since Ms Goh joined the National University Hospital (NUH) Paediatric Home Care Programme in 2014, she has not been hospitalised once.

She has even been out and about.

In April, her first social outing in 18 years was to Madame Tussauds Singapore to see the wax figure of her idol, celebrity Andy Lau.

Madam Yong credits her daughter's better health to visits by a home-care team, who are able to identify problems early and nip them in the bud.

 

Ms Goh's condition, spinal muscular atrophy type 2, causes her muscles to waste away because the nerves controlling them do not work properly.

She is bed-bound, and unable to sit up or move her head, which faces right permanently. In addition, she cannot swallow well, making her prone to chest infections.

Early intervention at the first hint of an infection helps her to sidestep lengthy hospital stays.

The programme, which was started in April 2014, has helped 41 patients so far. Twenty of them are still getting regular home check-ups by a doctor and nurse team, who check the patients' vital signs and blood oxygen levels, for instance.

NUH is the second hospital to set up a children's home-care programme, after KK Women's and Children's Hospital. KKH's programme, where nurses make home-care visits and patients get medical checks at a multidisciplinary clinic, has helped more than 1,700 patients since 2001.


Ms Goh being shielded from the sun by her mother as she is assisted into a van to take her to the Singapore Flyer. For 18 years, Ms Goh left home only to go to the hospital. She has begun venturing out of her home this year after getting stronger through the National University Hospital's Paediatric Home Care Programme. ST PHOTO: KEVIN LIM

The NUH programme focuses on children with complex medical needs, who need oxygen or a ventilator to help them breathe, for example, and are mostly 18 years old or younger. Some, like Ms Goh, stay on it because they suffer from congenital conditions that are managed by paediatricians.

The effort is funded by the Ministry of Health and donations, and patients get subsidies based on their household per capita monthly income.

Dr Thong Wen Yi, 37, who heads the NUH programme, said its aim is to take medical reviews and outpatient clinic services to patients' homes because for many of them, making a trip to the hospital is challenging and risky.

Ms Goh, for one, no longer needs outpatient appointments, which used to be a requirement every one to three months.

Dr Thong added: "We also hope that we identify the medical problem early... and prevent any acute medical issues that would result in... hospitalisation."

There has been some early success. An audit of 18 patients found that the programme reduced the average number of days each patient spent warded in the hospital by nine days, over a year. Six in 10, in fact, were not admitted at all. Patients also saved up to $21,000 a year.

NUH's home-care team, comprising Dr Thong and Ms Elaine Hor, 39, an advanced practice nurse, also train caregivers, teaching them procedures such as how to suction phlegm from the mouth and nose, and provide emotional support.


Dr Thong Wen Yi (right), who heads the National University Hospital's Paediatric Home Care Programme, and Ms Elaine Hor (right rear), an advanced practice nurse, giving Ms Goh a health check up as her mother helps flip her on her side. The home care team visits Ms Goh every three to four months to check on her vital signs, blood oxygen level and so on. Their goal is to keep Ms Goh out of hospital by taking the outpatient clinic to her home, and to detect health concerns early. ST PHOTO: KEVIN LIM

Parents can also call a hotline manned by Ms Hor for medical advice. Said Ms Hor: "What I enjoy is the rapport established with the families... it is a journey with the family, through which you get to know them very well."

In fact, it was the pair who encouraged Ms Goh to venture out of the home when they noticed that she had become stronger. Her ticket to Madame Tussauds Singapore was their Christmas present to her.

This started the ball rolling.

She went on to visit another museum, and on June 15, she enjoyed a complimentary ride on the Singapore Flyer.


Ms Goh and her mother taking a selfie on the Singapore Flyer. She asked her mother to take as many photos and videos as possible so she could relive the experience at home. It is her third social outing of the year. ST PHOTO: KEVIN LIM

Although she was lying down and could not lift her head, her eyes shone as she exclaimed at all the sights around her, and instructed her mother to take lots of photos.

Said Dr Thong: "I cannot explain my joy when I saw the photo (of her on the flyer)."

Ms Goh, who has never been to school and was taught by her mother and aunt to read and write, said in Mandarin: "I still have other places I want to go to: Gardens by the Bay, S.E.A Aquarium and the Trick Eye Museum.

"I am already so old, if I don't go out now, then when?"

Madam Yong, a single parent, said her daughter used to be very conscious of people looking at her.

"There was once a mother who said to her child, 'don't be naughty or you will become like her'," she said. "But I tell her not to pay heed to what other people think."

Ms Goh showed signs of developmental problems at seven months of age. Her condition has deteriorated gradually throughout her life, and now, she can drink milk only through a feeding tube. Phlegm has to be suctioned from her mouth and nose daily, and she is hooked up to an oxygen tank.

But she remains chatty and cheerful, finding joy in the things around her, such as an impressive Barbie doll collection bought by friends, which she has displayed around her home, and a newly acquired snow globe from her trip to the Singapore Flyer, which has pride of place on the bed. She is also buoyed by the help she receives all around, from churches, charities and NUH, to friends and loved ones.

She keeps in touch with friends through the Internet and spends her day playing games on Facebook, using software that allows her to move the mouse with her gaze. She also watches local, Taiwanese and Hong Kong dramas.

Asked how she stays cheerful, Ms Goh says it is thanks to her always-smiling mother.

"She is my idol," she said.

A version of this article appeared in the print edition of The Sunday Times on June 25, 2017, with the headline 'Strong enough to venture out after 18 years'. Print Edition | Subscribe