Ng Hwee Suan was diagnosed at birth with intestinal failure, a rare ailment where her small intestine was not functional
Few children know KK Women's and Children's Hospital (KKH) as well as Ng Hwee Suan does. The nine-year-old girl has been in and out of the hospital so much that she has spent about half of her young life within its walls.
After she was born, she did not pass motion for two days and was diagnosed with intestinal failure, a rare ailment where the small intestine is not functional.
For the first 10 months of her life, she stayed in the hospital, where she was given total parenteral nutrition (TPN), where a special formula is injected directly into a vein to provide the body with nutrients.
She was only three days old when she had surgery to push her small intestine out through her abdomen, so waste could be collected externally in a colostomy bag. She has lived with this all her life. She goes to school with it, and her teachers know to call the family should the bag leak or burst, as has happened a number of times.
Hwee Suan still goes to the hospital frequently, but since she had an intestinal transplant in Singapore on April 2, there is hope that she will not be seeing so much of the hospital in future.
She is the second person here to have undergone this procedure. The first case took place in April 2022, and that girl, born in 2013 like Hwee Suan, is also doing well.
Intestinal transplants in Singapore are currently done under a pilot scheme, with approval given by the Ministry of Health on a case-by-case basis.
What made Hwee Suan's parents decide on the transplant was the amount of pain she had suffered in the past year.
Her mother, Madam Ivy Yeo, 47, said: "She was also vomiting so much, 10 to 12 times a day. She was like the Merlion. We had lots of plastic bags – in the car, next to her bed. There's always one within reach."
As Hwee Suan did not eat, what she vomited was mainly gastric juices.
Madam Yeo said: "She was in so much pain that she kept asking for painkillers. We had to admit her several times so she could get painkillers intravenously."
Even before that point, Hwee Suan had already experienced a lot of pain.
Initially, the doctors said she would likely be fine by the time she was six months old – some infants' intestines start functioning after a few months. But this did not happen for Hwee Suan.
When she was 10 months old, her parents decided to take her home from the hospital.
Madam Ivy Yeo and Mr Edwin Ng, whose daughter Ng Hwee Suan underwent an intestine transplant at KK Women’s and Children’s Hospital in April
They had been visiting her almost every day and were allowed to take her out for an hour each time, for her to spend time with her older sisters, then aged three and four. Being so young, they were not allowed into the ward.
Madam Yeo said Hwee Suan was in the high dependency unit with two other children with the same problem – one of them was three years old and had never left the hospital.
Seeing that was "quite scary for us", Madam Yeo said, and they decided that, no matter the difficulty, they were going to take their daughter home.
She works as a property agent, so her hours were flexible enough to allow her to care for Hwee Suan. Her husband, Mr Edwin Ng, 50, is a shipyard project manager.
It was difficult for the parents. Overnight, they had to learn how to administer the TPN, which takes 12 to 14 hours.
"There were so many things we had to learn to do – how to prime the cannula, insert the syringe, check the backflow. And sometimes, there is obstruction," said Madam Yeo.
They also needed to learn how to change Hwee Suan's bag of waste properly to prevent infection, as well as measure her output in order to balance the amount of TPN to give her.
It was also financially challenging for them. Before 2018, there was no subsidy for TPN, and each bag cost about $500. Hwee Suan needed it six times a week, but this was reduced to four times a week after a while. When the subsidy kicked in, the price dropped to less than $100.
Aside from that, there were many other expenses, such as the tubing, syringes, colostomy bags, and other medication.
"We were living on our savings for many years. I was quite frustrated," Madam Yeo said. Some of the bills were so high that the family had to pay them in instalments. By now, the couple's MediSave accounts have been wiped out.
While life was tough for her parents, it was worse for the girl, who was frequently in and out of hospital, often to treat infection.
(Left) Dr Chiou Fang Kuan, Head of Gastroenterology, Hepatology and Nutrition Service for paediatrics at KKH Women’s and Children’s Hospital.
(Right) Associate Professor Jeyaraj Prema Raj, Director of the Liver Transplant Programme at the Singapore General Hospital and one of the main surgeons for the intestinal transplants.
Dr Chiou Fang Kuan, head of gastroenterology, hepatology and nutrition service for paediatrics at KKH, who has been looking after Hwee Suan, said she could eat a little, but "nothing meaningful – a few spoons of soup, or three bites of a dumpling".
He added: "But when she ate, she got distended, she was in pain, she got indigestion, vomiting and diarrhoea."
Her parents wanted her to have a normal life, like her two older sisters. So she went to kindergarten, then school.
But she had to be careful and could not run around in the hot sun like her classmates. She was always at risk of dehydration, since she could not drink to make up for any lost fluids.
Dr Chiou said: "Sometimes, they are dehydrated by the time they reach home at 6pm. They're really as dry as a prune, and that predisposes them to other complications."
When that happened, Hwee Suan would need to be hooked up for TPN for 18 to 20 hours.
Things improved in 2018, when she was about five years old. Her bowels started working and the family thought that they were finally out of the woods.
Her father recalled that the family was frequently at Din Tai Fung restaurant that year, as Hwee Suan's favourite food was its yang chun noodles, followed by KFC.
But within the year, she started losing weight because her intestine was again unable to absorb nutrients from the food she ate. By the time she was seven, she was so thin that her bones stuck out. She was put back on TPN.
Dr Chiou explained: "There was a short period when Hwee Suan was able to tolerate just enough feeds to meet her minimum requirements and we gave her a trial period without TPN.
"However, during this period, her metabolic demands outstripped what her intestine was able to provide in terms of nutritional intake.
She became malnourished and had repeated hospitalisations. It became very clear then that she would require TPN for life without intestinal transplantation."
But "for life" for Hwee Suan meant at most another year or two if she did not get a transplant, said Associate Professor Jeyaraj Prema Raj, director of the liver transplant programme at Singapore General Hospital and one of the main surgeons for the intestinal transplants.
This was because her liver was beginning to be damaged. When nutrients go straight into the blood without being processed by the stomach and intestine, it causes stress on the liver, which processes the nutrients.
Her liver was already showing signs of scarring and fibrosis. This can be reversed after a transplant – but not if it is delayed to the point of cirrhosis, which is permanent damage.
She was also running out of main veins for the TPN.
Dr Chiou said that there are only four places where the tube for the TPN could be inserted, and two of Hwee Suan's were already blocked. That was the signal that a transplant was needed, as the other two would likely get blocked at a faster rate.
Ng Hwee Suan on the way to the operating theatre on April 2, 2023.
Following the transplant in April, Hwee Suan's doctors are confident she can grow up.
She has since been going for regular scans, both ultrasound and scopes, which are done through the stoma where her new small intestine now protrudes.
She will continue using colostomy bags for about a year. Once the doctors are convinced that everything is working fine and there is no rejection of her father's intestine, they will do another operation to link the end of the small intestine to the big one.
Then, Hwee Suan will hopefully be able to say goodbye to those bags that have been with her all her life.
Madam Yeo said that although she was the better match as a donor for Hwee Suan, they decided her husband would be the donor. This is because she has been the main carer for Hwee Suan and it would be easier for her to look after both daughter and husband than for him to do so.
Mr Ng, who gave about 160cm of his small intestine, added: "She gave birth to our three daughters, so it's only fair."
Mr Edwin Ng donated almost a third of his small intestine to his daughter Hwee Suan.
Furthermore, he and Hwee Suan, as well as his second daughter, share the same birthday – Nov 19.
Hwee Suan's two older sisters, Hwee Ling and Hwee Him, have been very supportive, spending time with her and distracting her with games when she is in pain.
Madam Yeo said that in spite of all her pain and suffering, Hwee Suan has remained cheerful.
"She's a bright girl. She understands what is happening to her, and why she is constantly getting injections."
A couple of years back, she decided she wanted to be paid for every "poke" she gets.
Mr Ng explained that she felt if they paid her, they would try to minimise the number of such pokes. It became a bit of a game, with her negotiating the price and even offering a discount for every 10 pokes.
Hwee Suan uses the money to buy computer games, her favourite being Roblox.
Her mother admitted that Hwee Suan has too much time screen time, but said that is the child's way of coping with the pain or discomfort of the battery of tests and treatments she undergoes, such as the post-transplant scopes to check that the new intestine is working.
A catheter is poked through the stoma, up the intestine for about 20cm, and a biopsy done. The procedure takes about 10 minutes and is done weekly. Madam Yeo has asked if it can be reduced to once a fortnight, as it is an uncomfortable procedure.
But Hwee Suan is willing to do the scope without sedation, understanding that too much sedation is bad for her. So she plays a computer game as the scope is carried out.
Ng Hwee Suan with her family and their helper (left).
"She's very brave and such a happy child," said Madam Yeo. "The only time she really cried was immediately after the operation, when she was tied down so that she didn't dislodge any of the more than a dozen tubes running into her."
Off the top of his head, Dr Chiou said these included "an endotracheal tube (to the lungs), nasogastric tube, gastrostomy button (both can be used to for nutrition as well as to decompress the stomach if it is too full), anaesthetic line, Hickman line (for putting antibiotics into the bloodstream), intra-arterial line (for monitoring), peripheral intravenous cannula, urinary catheter".
The cost of the transplant is high – the estimate given to the parents was more than $202,000, with MediShield Life paying slightly more than half of it. But the medical bills after the transplant are expected to be less than if she continued on TPN. The estimate is $95,000 in the second year, falling to $40,000 by year five.
Insurance does not cover the donor's surgery and treatment, estimated at more than $23,000.
No matter the cost, her parents are glad Hwee Suan should be able to lead a more normal life now.
Three weeks after the transplant, she was taken off TPN. But the doctors have said she can have only home-cooked food for now. She eats eggs, fried rice cooked with very little oil, and stewed chicken made by her grandmother.
"The chicken is my favourite," Hwee Suan said. "But I want to go to Din Tai Fung for the noodles."
