In Pictures: Looking after a child in palliative care

A faint gargle could be heard from the corner of the otherwise quiet office of the interior design firm. 
The sound was coming from two-year-old Chantelle Lim, seated in a highchair next to her mother Renee Oh, 34, who was trying to clear phlegm and saliva from her daughter’s throat as she is unable to swallow on her own.  
Ms Oh, an accounts and administrative executive, takes her daughter to work most days of the week. 
Once or twice a week if she is well, Chantelle goes to Yishun Park School, a special education facility run by the Rainbow Centre. 
The toddler suffers from multiple disabilities including cerebral palsy, which permanently affects body movement and muscle coordination. She needs round-the-clock care.
In this week’s In Pictures, CNA TODAY spent time with parents Ms Oh and Mr Bryan Lim to understand the challenges, heartaches and sacrifices made in caring for their child, whose conditions have been assessed to be life threatening.
Chantelle was born on April 12, 2022.
It was Ms Oh’s second pregnancy after she miscarried twins in 2019 eight weeks into the pregnancy. 
“When I knew I was pregnant again, I was happy but I was worried that I would miscarry again,” said Ms Oh. 
As her pregnancy progressed and her due date drew near, no one could have  imagined the harrowing events that would follow.  
Due to complications at birth, Chantelle was delivered without a pulse and had to be resuscitated. 
The traumatic birth led to brain damage and she was subsequently diagnosed with cerebral palsy, epilepsy and global development delay. 
The girl is unable to walk, speak, swallow and has impaired vision.
She also has dystonia, a neurological condition that causes uncontrollable muscle movements. 
“At first I didn’t know how to feel, asking everyone why this happened to me. I felt it was unfair, I just wanted a stable family and a healthy child. I never expected her to be in this condition,” said Ms Oh. 
Visits to the hospital are routine for the Lim family. 
Ms Oh said that on average, Chantelle is admitted to the hospital once a month for fevers, seizures or urinary tract infections.
In October, Ms Oh took her daughter to the KK Women’s and Children’s Hospital for a surgical procedure to replace a feeding tube. 
She had a major health scare in October 2023 when she was hospitalised for three weeks due to a double viral infection. 
Her precarious health condition means her parents are constantly vigilant. 
Her mother checks her temperature twice daily and is always on the lookout for signs of laboured breathing. 
For Chantelle’s father Mr Lim, it was difficult for him to come to terms with her condition at the beginning. 
“When she was born I felt very lost, wondering why my child was like this. A lot of anger in me. I started to have very negative thoughts. Now I am used to it,” said the 29-year-old.
Ms Oh said raising Chantelle is “twice as hard” compared to raising a healthy child – an understatement perhaps, considering the challenges she faces. 
“This is my first time being a mother. But I am starting at the hardest point. I’m still learning.”
As primary caregiver, she is constantly learning how to best manage her daughter’s medical needs. 
Mr Lim admitted that he is less “hands-on” compared to his wife when it comes to caring for their child. 
“I am still a bit scared, even when I am carrying her,” Mr Lim said.
“I do love my daughter, but sometimes when taking care of her, I lose my patience. Maybe I am tired due to my work, but I know my wife is also very tired,” he added. 
Mr Lim works at a family-run fruit stall in Telok Blangah and often pulls 10 to 12 hour shifts, six days a week. 
Getting a domestic helper to care for Chantelle would be difficult, as it would pose a significant financial burden for the couple who live in a two-room rental flat.
To assist with Chantelle’s care, they have enlisted the help of HCA Hospice. 
The hospice’s senior palliative care nurse Low En Yun visits Chantelle one to three times a month to check on her vitals and also the wellbeing of her parents.  

Ask any parent about parenthood and he or she would probably say that sacrifices are par for the course. 
But perhaps it would be difficult to imagine the scale of the sacrifices made by parents caring for a child with a serious health condition. 
“I don’t really have alone time or time with my friends. I have only been on a plane once. I wanted to fly around, explore and see the world. I even thought of living in other countries. But my plans changed,” Mr Lim shared. 
His sentiments were echoed by his wife. 
“In the past, if I wanted to go out to play mahjong or sing karaoke I would just go. But now, I will ask my friends to come to my house to play,” said Ms Oh, who plays mahjong about twice a month to unwind. 
For the couple, the excitement of parenthood has been overshadowed by the challenges and difficulties they face. 
Still, Ms Oh said that they have “no regrets” on the sacrifices made for Chantelle. 
“It is my responsibility to look after her, special needs or not.”

Between work and the hospital visits, the couple make sure to carve out time to take Chantelle out of the house ever so often to create more memories with her. 
The trips, be they to the mall or the pool, are not without risks as Chantelle is easily susceptible to viruses. 
“If I don’t bring her out, it will be miserable for me because all our memories are only at home. All I want to do now is to work, save, take her out, and bring her to as many places as I can. Hopefully she will one day be able to travel on a plane,” said Ms Oh. 
She said the doctors did not have a definitive answer to how long Chantelle will live, but told her to “cherish every moment”. 
While getting ready to take Chantelle to her parents’ home, Ms Oh picked out a matching ‘Labubu’ T-shirt from a pink cupboard. 
“I like to doll her up and tie ponytails with her hair. Every day she has a different hairstyle. She likes the feeling of having her hair combed and styled,” she said. 
The family looks forward to celebrating Chantelle’s birthday every year.
Ms Oh said: “Every year that she is able to celebrate her birthday is a blessing. If we have the finances, we will do a celebration. Be it at home, a barbecue, or to go for a steamboat meal.”
“Some people think that it will be easier if she left us. Maybe she won’t feel pain… I don’t want her to feel pain, but I can’t imagine waking up and she’s not beside me.”