09 November 2015, Uncategorized
We would like to congratulate Nurse Li Ke Jia Lily for receiving the Nurses Merit Award 2015! With 12 years of experience in nursing, Lily is an Assistant Nurse Manager of Star PALS, a service under HCA Hospice Care, providing paediatric palliative care to children in the community.
The award is given to nurses who have demonstrated consistent and outstanding performance for the past three years, participating in professional development and promoting the nursing profession.
“Lily is a very committed and dedicated team leader, caring for her patients and caregivers,” says Angela, Senior Nurse Manager of HCA Hospice Care.
Lily has gone beyond and touched the hearts of many children and their families, leaving a huge imprint on their lives. As a palliative nurse, she considers it a privilege to enter every child’s life at such a crucial moment. Witnessing the resilience and joy her patients display through their physical struggles teaches Lily valuable lessons and encourages her to press on doing the work she does. Lily steadfastly believes that all her patients and their families deserve the best possible care and support, and is determined to find ways to better their lives.
Her commitment is evidently expressed through the close knitted relationship with her patients and their families. She would remember children’s birthdays and buy presents for them. She constantly finds ways to grant the last wishes of her patients and use her own weekends to help mind the children so families could have the time to handle their own business. Many caregivers trust, appreciate and feel assured with the guidance and love from Lily.
Coloured by her spiritual beliefs, Lily feels that death is not the end of life and it motivates her to do more for those under her care.
“It is the start of something eternal for the dead and a growing process for loved ones around. That makes my job important,”says Lily.
Just like anyone else, patients and their families need the human element of love, care and affirmation. Lily makes the effort to relate to each of them according to their background, needs and abilities.
“Every child that crosses my path would always take a part of me away in exchange for a part of themselves and their family,” says Lily as she reminisces her time spent with children under her care. “They have definitely left deep memories I will treasure forever.”
These experiences touch the heart of Lily and bring meaning to the work she does.
“I am more than thankful for the award. The children are the ones who made it possible. It is really all about living and transforming lives, not about dying,” says Lily.
Nurse Lily received the award at Ministry of Health Dinner and Dance 2015. Extremely honoured and humbled to receive the Nurses’ Merit Award 2015, she continues to stand firm in her belief.
“Every patient is precious in God’s eyes, nothing makes me happier than knowing I am part of their lives. I will keep striving to serve them with my best, even with the limited time and resources,”says Lily.
Nurses of HCA Hospice Care go the extra mile to provide the best for their patients. You may drop a word of encouragement for Nurse Lily and her team at email@example.com. You may visit http://www.starpals.sg/ to find out more about Star PALS and the work we do.
14 September 2015, Uncategorized
World Hospice and Palliative Care Day takes place on the second Saturday of October every year. It aims to raise awareness and understanding of the needs of those with life limiting illnesses as well as their families and continues to create opportunities where like-minded individuals come together, to bring up issues pertaining to palliative care.
Hidden lives. Hidden patients is the theme for this year’s World Hospice and Palliative Care Day, taking place on October 10, 2015. This year’s theme focuses on patients living in unique conditions that often struggle with access to palliative care including children, LGBT individuals, HIV prisoners, soldiers and those living in rural settings.
Star PALS, a service of HCA Hospice Care was recently reported in the World Day Report. Launched in 2012, Star PALS believes that every child is precious and has impacted almost 160 families since then.
Dr Chong Poh Heng, Programme Director of Star PALS, shares about his concern regarding hidden children in Singapore with genetic conditions. The dedicated team continues to provide Medical Care, Psychological Support, Art & Music Therapy, Family Care, Respite Care and Bereavement Support throughout. The services provided extends beyond the care of patient to their families. As reported, children and young people with genetic disorders are living longer thus posing a challenge as they transition into adult palliative care services. Dr Chong says, “These families certainly deserve the comprehensive and compassionate support that palliative care can provide, to make every moment meaningful and worthwhile.”
As an extension of Star PALS services, are the Medi Minders. They are a group of trained volunteers, who spend four to eight hours with patients while caregivers have a break. Medical students like Janice Soo, renders her services and dedicates time to make a difference and provide respite care for Star PALS families.
No matter how brief a shooting star lights up the night sky, its brilliant trail leads a path of hope to all who observe it. Star PALS aims to improve the quality of life for children with life limiting conditions and their families. Click here to find out more about Star PALS and how you can help make a difference in the lives of these children. Join us on this journey as we brighten each and every shining star!
14 September 2015, Uncategorized
“As a Medi Minder, I learnt to appreciate the language spoken without speech. Time spent here is more than just hours and minutes. It is always treasured and meaningful,” Janice Soo, 20, finds great joy and meaning in serving as a Medi Minder for the past three years.
Medi Minders are a group of trained individuals who has the passion to bring quality and joy into the lives of children with life limiting factors. These children can enjoy life to the fullest with Medi Minders – reading, singing and entertaining them. A Medi Minder provides respite care for caregivers and takes over their role for a period of time.
Janice’s initial stages as a Medi Minder was challenging as she had to adapt and learn new ways of interacting with the children in Star PALS.
“Slowly, I began to feel their responses, emotions and needs. Such level of understanding and connection is really amazing. All it would take is sincerity and the sensitivity that comes,” says Janice. Her love for the children soon overcame the mixed feelings she initially had.
Many encounters with these children and their families are memories deeply etched in her mind and heart. Aqilah was one of those who left Janice with deep footprints.
“I often watched movies, went shopping and did things together with Aqilah, who was like any other 14-year-old teenage girl. I was there for her as a companion, walking the journey with her,” Janice says. They planned for many future shopping trips together. Sadly, Aqilah passed on while Janice was overseas. She felt a tinge of regret not being by her during the last moments but she holds on to the treasured memories. “Nevertheless, I am glad we managed to fulfil her last wishes together. I believe the time spent was not just fun but quality time.”
Being a Medi Minder has taught Janice to be sensitive to the different needs around her and helped her grow in maturity. Even though she feels sad that some children have passed on, she finds it a privilege to be able to help in the little ways she could. “At the end of the day, I always feel satisfied and recharged being able to touch lives in this manner. The caregivers are always very appreciative and generous with their thanks, for the little that I do,” says Janice.
Medi Minders like Janice provide some respite for the children’s care-givers. Initially they may feel apprehensive about leaving their children but after a session or two, they are confident that their children are in good hands with the Medi Minders.
“I am very happy with the service of the Medi Minder. It allows me to spend time with my other child,” says a regular user of the Medi Minder’s service. “My son is very happy whenever the Medi Minder visits and I don’t have to worry about him whenever I’m out.”
All it takes to be a Medi Minder is a willing hand with a big heart! Find out more about being a Medi Minders @ http://www.starpals.sg/services/medi-minders/ and join us today!
14 September 2015, Uncategorized
Losing a child does not mean you stop being a parent, and a proud one at that. This maternal and paternal pride was evident in the faces of bereaved parents who attended the Star PALS Remembrance Evening on 15 August as they chatted animatedly and showed each other photographs of their children on their mobile phones. Their rich reminisces brought tears, laughter and spontaneous hugs among old friends and strangers alike.
The Star PALS Remembrance Evening is a simple and personal event that is held every year for parents, siblings, family and caregivers of young Star PALS patients who have passed away. Filled with meaningful songs, reflective activities and inspirational sharing, the event brings families together in a heartfelt celebration of love and a candid acknowledgement of grief.
Amidst cosy tealights and cuddly toys decorating the room, families listened to a moving opening address by the President of HCA Hospice Care, Dr. Tan Poh Kiang. Parents Kelvin and Shu Hui shared the intimate details of their journey with their beloved daughter Kaelyn, emphasizing the beauty of her life instead of the length of it, and the lessons they had learned from her.
Families then filled up a Memory Jar with coloured sand, handwritten notes to their child, whimsical feathers and flower petals while they chatted with staff and other families at their tables.
The most poignant part of the evening saw families and staff rising for the Moment of Remembrance, where names of all Star PALS patients who had passed away were rolled on the screen to a stirring song. Fond smiles formed on tear-stained faces as families watched their children’s name appear. Trembling hands found steady ones to hold on to in silence. This touching moment was completed with the reading of a poem specially written for the event, “Precious Little Love”, by medical student and volunteer, Pravin.
As the evening came to a close, a sense of peace and camaraderie gently enveloped the room. Families left with warm embraces and well wishes, knowing that they would always be connected in a shared bond of love, grief and hope. And if their children could see them that evening, they, too, would know that they are always loved, and never forgotten.
03 July 2015, Feature
The award recognises healthcare workers who are inspirational role models possessing courage, dedication, selflessness, steadfastness in ethics, compassion and humanity.
We rejoice and celebrate with Dr Chong Poh Heng, Deputy Medical Director at HCA Hospice Care and Programme Director of Star PALS, who has recently been awarded with The Courage Fund’s 2015 Healthcare Humanity Award.
Besides his duties assisting HCA’s medical director in the organisation’s clinical work, Dr Chong founded, and now directs, Star PALS – Singapore’s very first paediatric palliative home care service which aims to improve the quality of life for children with life-limiting conditions.
Under Dr Chong’s leadership, Star PALS has grown from a 2-person team to a 10-person multidisciplinary team comprising doctors, nurses, and social workers that has served 170 young patients and their families over the past 3 years. Dr Chong’s dedication goes beyond his front-line work – he also participates in advocacy efforts such as the paediatric and young adults ACP task force.
Dr Chong’s commitment to achieving this mission for each and every one of his patients and families is what distinguishes him as exemplary. He never fails to go the extra mile, visiting his patients often not just to relieve the physical symptoms of the children, but sometimes simply to assuage concern. He believes that no child should die suffering and actively implements initiatives like respite care to lighten the burden on these families – emotionally, physically, and financially.
“Doing the work we do, we also have to believe in miracles. Faith is believing. Only if you believe will you look at each situation and really put in your all to work towards it,” Dr Chong said.
More than just being a healthcare worker, Dr Chong goes beyond, winning the hearts of many patients and their caregivers through his actions. “Dr Chong genuinely wants to know what we need, and what we think is best for our own family,” a caregiver shared. “He doesn’t lead us, or smother us by telling us what to do. Instead, he walks with us and gently guides us to express what we really want – which is something we don’t always know! Where can you find a doctor like this?”
He has taken on many roles as advisor, confidante, advocate and friend. On several occasions, Dr Chong has played event coordinator, granting the wishes of his patients by organising birthday parties and outings, regardless of the challenges faced. For example, it may have seemed like an impossible wish for a morbidly obese patient relying heavily on life-support machines to visit the panda Kai Kai at the Singapore River Safari, but Dr Chong made it possible by arranging for the necessary equipment and support. Wishes were fulfilled, beautiful memories etched, and joy added into the lives of his patients and their families.
More often than not, he finds himself learning life lessons from the children under his care. These children, he says, often show a resilient strength, with hope for the best of what they have left. “That is where I find richness and continue doing the things I do,” says Dr Chong. He shared an encounter with a patient who worried more about his family’s well-being than his own condition, and asked Dr Chong to take care of his family. Dr Chong could not express in words the emotions this stirred within him.
Once again, congratulations Dr Chong! Your selflessness and genuine care for the patients truly deserve our admiration and respect!
HCA Hospice Care is proud of its dedicated and compassionate clinical team! Do email us at firstname.lastname@example.org if you have any good feedback, or words of encouragement for Dr Chong, or any other of our other staff members.
03 July 2015, Uncategorized
With the help of dedicated volunteers, the Family Camp 2015 was planned for a total of 29 children and their families.
It was sweltering among the prawning ponds, and Mdm Tan* furiously fanned herself and her son, whose limp body she held close. “Jin jua! (Very hot) ” she said, smiling cheerfully nonetheless. She glanced at her husband and older daughter, who were engrossed in prawning.
A splash, shout, and squeal later, a thrashing prawn was pulled from the pond. “Photo! We must take a photo!” Mdm Tan said excitedly, and volunteer photographer Lawrence appeared on cue to snap a shot of the happy family with their prawn.
A day out with the family may not seem like such a big deal to many of us. But for the Star PALS families, an outing is a complicated affair.
First, there’s the condition of the child to take into account. Second, the logistical feat of arranging for bulky equipment to be transported, or sourcing for affordable portable equipment. Finally, the possibility that an emergency could happen outside with no access to medical help weighs as a constant worry.
This is where Star PALS came in, to organise an event that the entire family could enjoy while addressing the families’ concerns.
After all, the welfare of not just the patient, but the entire family, is crucial in paediatric palliative care. “As far as possible, we want to make it possible for our patients to enjoy opportunities with their families, just like any other child,” said Dr Chong, programme director of Star PALS.
With the help of dedicated volunteers, the Family Camp 2015 was planned for a total of 29 children and their families.
The event’s programme was crafted carefully – first came prawning, which was selected as a more sedentary activity in which many of the patients could participate with their families, while the more active children went longkang fishing. After lunch, the families made their way to the Upper Peirce Reservoir for a Water Venture kayaking and dragon boating session, while the children rested in their Orchid Country Club hotel rooms.
Dinner, complete with balloonists, magicians, a photo booth, and a line-dancing team, rounded off the first day of the camp. The next morning, some of the patients tried hydrotherapy in the country club swimming pools, while parents were treated to head and shoulder massages by professional massage therapists.
Through it all, a team of volunteer nurses, Star PALS Medi Minders (trained volunteers offering respite care), and doctors were kept busy in the hotel rooms. By standing in to provide respite care for the Star PALS children who weren’t able to join in the activities at any point in the event, these volunteers allowed the children’s parents to relax with the rest of their family, with peace of mind.
The volunteer minders also followed the children who were able to participate in activities, like the prawning session, to take care of their needs as far as possible.
“Wherever I look, there’s a nurse or doctor,” one of the Star PALS fathers said. “It’s rare for us to be able to feel so secure… to know that if we need the help, it’s just a shout away.”
“Thank you, Star PALS for organising this camp.”
Star PALS would like to thank all volunteers and sponsors who made the event possible.
Know a child and family who can benefit from our services? Do refer them to our website at starpals.sg so that they can find out more about the support we can provide them. If you’re interested in volunteering with us, email us at email@example.com.
22 February 2015, Our Services
In the first part of the article, we found out more about music therapy from music intervention trainer Serena Lo. This week, one of our Star PALS mums shares her family’s experience.
Twelve-year-old Esther, who has been living with arthrogryposis since birth, depends heavily on her parents and domestic helper. Although her condition prevents her from speaking or moving, the bubbly girl communicates with heart-melting smiles and giggles.
Children under our paediatric programme, Star PALS, are given the opportunity to try music therapy with Serena, music intervention trainer. Esther and her family have gone through the sessions, and are enjoying it thoroughly.
We caught up with Mdm Chng, Esther’s mother and primary caregiver, to find out more.
HCA: How did you first get to know about music therapy?
Nurse Serene Wong is our primary nurse, and she noticed that Esther tended to smile and laugh when the nurses sang to her. She thought that Esther might benefit from the music therapy sessions with Serena.
HCA: What made you decide to proceed with the session?
Basically, in a parent’s heart, we always hope to do our best for our children. Honestly, we would try anything if we knew it has a chance of helping her.
Besides this, we’ve always known that Esther responds well to things she can hear, laughing when she listens to music and even conversations. I’ve also heard from her teachers in the Rainbow Centre that she enjoys music there as well.
HCA: What happened during the session?
I didn’t know what to expect at first. Then I saw how professional and systematic Serena was, unpacking all the things she had with her – the keyboard, and all the percussion instruments – I immediately began to record the session.
She started with a greeting song, where we sang ‘Say Hello’. She then introduced us to the all the different instruments she brought along, letting us hear the different sounds they produced.
Serena didn’t just play the instruments for Esther, but helped Esther feel the instrument, and “play” the instrument by holding her hand and moving it to use the instruments.
Throughout, Serena asked us to play along to the music and help Esther with the playing too so she could join in. We sang many different songs, and nearing the end Serena taught us to do the simple massage and Esther’s usual exercises to the music.
HCA: Were there any parts of the session that was specially planned for Esther?
Definitely! She asked us what Esther likes. When she found out that Esther laughs at repetitive sounds, she included songs like ‘Old Macdonald’, which Esther really enjoyed. She learned that Esther took a taxi to school, and changed the lyrics in ‘The Wheels of the Bus Goes Round and Round’ to ‘Esther Sits In A Yellow Taxi’. When she sang, ‘Weah! Weah! Weah!’ like a crying baby as part of the song, Esther really loved it!
HCA: How did Esther respond?
We were so surprised at how happy she was during the session! We had never seen her so stimulated and responsive. She was laughing and smiling throughout the session.
I felt so glad that I recorded the sessions. Sometimes, I play back the tape recording, or show Esther the video, and she gets as excited as she did during the session.
HCA: Was there a difference between letting Esther listen to normal music, and the music therapy process?
Yes. She was definitely a lot more stimulated during the session. I think the difference is that she usually listens passively, but Serena got her to take an active role this time by playing the instruments with us, and making the actions like us kissing her, or even her kissing us. I could see her thinking and processing the lyrics in the song.
HCA: How do you see music therapy factoring into Esther’s care moving forward?
Personally, I’m hoping to see more responses from Esther, and hoping it can even affect her range of motion. We’re looking forward to the next session already!
This February, Star PALS kick-started the Star PALS Empowerment Series to equip caregivers with useful skills that could help them in their journey.
The Star PALS Empowerment Series is targeted at the parents of the children under the Star PALS Programme. Composed of workshops by qualified speakers on a variety of subjects, the series is slated to be a bimonthly affair.
“A vital part of paediatric palliative care is supporting the patients’ loved ones,” said Ang Siang Ping, Medical Social Worker with Star PALS. “The Star PALS Empowerment Series will include all sorts of courses that we hope can help these caregivers reconnect with themselves.”
Medi Minder assignments were arranged in conjunction to the session to allow parents to take the time off caring for their children with peace of mind.
The very first session in this series was entitled, “When the going gets tough…coping strategies”, and was led by trainer Imelda Sutisna, Managing Principal Consultant & Master Trainer of JOURNEY Training & Consultancy, who specialises in imparting proven thinking processes to developing capabilities. Imelda has a wealth of experience in psychology and training and development.
By 9am, the HCA Auditorium was transformed into a cosy and welcoming environment with rugs, cushions and snack trays awaiting the parents. Two ladies from the British Association also joined in, very generously preparing an inviting spread of quiche, cake, and scones for refreshments.
When the participants were finally settled comfortably on the rugs and chatting with each other, Imelda began the session with a needs assessment. Working in teams, the parents discussed what sort of courses and sessions would be useful for them – from information on therapy aids like aromatherapy and hydrotherapy, to grooming techniques for the children, to more practical information such as generating passive income.
After this, Imelda moved into relationships – in the theme of Valentine’s Day, which coincided with the workshop. She asked the parents to share with each other the ways they support and strengthen their own relationships. Together, they brainstormed ways to improve their relationships,
Finally, they moved the discussion to brainstorming for ways to make the everyday fun and enjoyable for the whole family.
It became apparent that the parents had many ideas and experiences to share, and many important perspectives for each other to consider. Finally, the session had to come to an end before Imelda could continue on to the topics of adversity. She concluded with a final slide on the ‘Marriage Box’:
“Marriage at the start is an empty box. You must put something in before you can take anything out. A couple must learn the art and form the habit of giving, loving, serving, praising – keeping the box full.”‘
The participants most enjoyed learning from other like-minded individuals who had a deep understanding of the challenges they all faced. Although a majority of the parents weren’t acquainted before the session began, they were chatting like old friends and exchanging contacts by the end of the session.
“I’m glad that these parents are given the opportunity today to meet each other,” shared Imelda. ”I’m glad they also had a chance to get a break – some of our participants today seemed rather downcast and tired when they first came in. I also hope they’ll form a supportive network between each other.”
Star PALS would like to thank Imelda and her team of volunteers, as well as the British Association, for making the session a success.
05 January 2015, Our Services
Children under the Star PALS programme at HCA Hospice Care are provided with several sessions with music intervention trainer Serena Lo. What’s music therapy? We find out more from Serena.
HCA: What’s the theory behind music therapy? What makes music an effective way to help an individual?
Neurologic Music Therapy is defined as the therapeutic application of music to cognitive, sensory, and motor dysfunctions. In scientifically-based research, it’s been shown that music can stimulate multiple parts of the brain at one time, and even reconnect them. Through various techniques, music therapists make use of different kinds of music and its components to help patients in different ways – like in speech, gross and fine motor skills, and social skills.
Besides this, everyone knows how music can soothe the body, soul, and spirit. I see music as a vehicle, a language, and a tool, that can convey messages of love and emotion, and facilitate reconciliation and healing in relationships.
HCA: How do you tailor the therapy sessions for our Star PALS patients?
In Olive Tree Developmental Center, where I work with children with special needs, I compose songs and teach phonics, numbers, and reading through rhythm and music. Sometimes, I incorporate dance, movement, speech and drama when it’s appropriate to the challenge of the child.
The patients at Star PALS, however, are often bed-ridden with much more serious conditions. We need to be very observant of the parts of their body that can move and respond to beat and rhythm – it could be a foot, or even a finger. We then use a small drum or small percussion instrument so he or she can participate. I encourage caregivers to sing or play recorded music, massaging or performing their usual physiotherapy with the music.
I also use the sessions as a platform to bring the whole family together as a band. The more sounds from different instruments, the more the child’s brain is stimulated. Often, siblings may feel neglect or jealousy. It’s also a good opportunity to give them some attention, and rope them in as musicians to help. Sound is energy. When it is done with love and joy, it can do wonders to bond the family, bring comfort, and restore relationships.
HCA: Give us a rundown of what you’d normally line up for a one-hour session.
We begin with a greeting song, and songs of assurance for the patient, which we personalise by changing lyrics. I find out what are the child’s favourite songs, sometimes modifying lyrics to address the family’s needs and alleviate the tension the family is going through. Sometimes I compose new songs to encourage the child. I also ask the child if they would like me to sing to their family, to communicate their love on their behalf.
Throughout the sessions, I encourage family members to join in with percussion instruments, to sing along, and to gently tap or massage the child with the music. Caregivers can also help their child play the musical instrument by moving their hands and feet if the child is unable to do so themselves. It’s also great for parents to take videos of the session so their child can see their own face and the faces of their parents, and feel the music and joy any time.
I often end the session with a debrief, observation, and feedback from the child’s parents. I share links and information on music therapy and the latest research. I teach them how to perform the therapy and intervention, and encourage them to do it as often as they can. I believe in empowering these families with the ability to bring this joy into their child’s life.
HCA: Would you be able to share a particularly memorable moment with one of our Star PALS patients?
I recall fondly sessions with Sandra (not her real name), and her family. Although she couldn’t normally move her hand, she would respond and try to lift her hand to touch the drums, laughing. Her condition deteriorated rapidly and she became unconscious. One day, I visited her at the ICU with my keyboard, and began singing to her. She started tearing and gripped my hand tightly.
I asked her mother what she wanted to communicate to her, and put these feelings into words. Her mother then sang this song to her in tears.
I’ve kept in touch with Sandra’s family, even after she passed on, and have been glad to hear that their family is doing well!
HCA: What challenges do you face?
Sometimes, parents do not see how music therapy can improve their child’s condition. After a couple of sessions, though, most would begin to see the joy their child experiences.
HCA: What’s your own background, and how did you get involved in music therapy?
Since young, I’ve had plenty of exposure to music through my parents. I have a background in piano, and as a church musician. Together with my husband, Philip, I was involved in music ministry, youth work, pastoral work, and counselling. I’ve also been teaching students, including those with special needs, piano. I recently did a Public Performance Diploma in Teaching Pianoforte to Physically & Intellectually Challenged pupils.
Four years ago at a music therapy symposium, I met Dr Deforia Lane, who recommended that I attend the 28th Advanced Neurologic Music Therapy programme with the Colorado State University. I’ve never looked back since.
It was very painful and traumatic for my family and me when my own husband died suddenly in 1998. My three children will still very young at that point.
My family was blessed and fortunate to have the support and love of family members, pastors, and friends from church to help us cope in the earlier years, for which I am very grateful. I am especially grateful for the faithfulness and help of my children’s Godpa. I am, most of all, thankful to God for seeing us through. Money and status can never buy love and time. Everyone will die one day – it’s not when or how we die that counts, but how we live our lives. Every moment and every life is precious.
God is love. As a recipient of God’s unconditional love and grace myself, it has been an honour and privilege to now be able to let love and restoration flow through my music and my work.
Enjoy singing, dancing, and making music!
By Stella Kew
No one should ever believe that palliative care is a dead end! It’s a helping hand, a guiding light, a ready friend – no matter what the condition of its patient.
Our little girl, Lois, was diagnosed with cerebral palsy when she was born. Because of her delayed development, she needed a nasogastric (NG) tube for feeding, and fell ill often.
That NG tube especially was a huge obstacle for us. We took Lois home when she was three months old, but found it almost impossible to insert the tube. Would you believe that I used to bring Lois all the way to the National University Hospital from our home in the east, just to have the tube inserted?
I didn’t have any choice at that time, because I was afraid of hurting her. The many warnings about what could go wrong made it so much more stressful.
Then, in December 2012, a host of angels stepped into our lives: Dr Chong, Nurse Lily, and later, Nurse Serene and the rest of the Star PALS team. It was so reassuring to know that I could call them whenever I had any struggles, and receive guidance and help right away.
The team increased our confidence with handling Lois by sharing their knowledge and expertise with us. Dr Chong was the realistic one who kept us informed on what we should expect because of Lois’s condition, while the nurses were a great source of positivity who would always keep our spirits up and our hopes going.
They didn’t just draw the line at caring for Lois, but took good care of our whole family. They would shower attention on Angel, Lois’s older sister, during their visits. When they noticed we were especially tired, they would automatically arrange sessions with the Medi Minders so that we could take a break.
The Star PALS team has rejoiced with us during all the joyful moments: seeing Lois get weaned off the NG tube and begin eating on her own. They were there to watch our mischievous daughter learn to pull Angel’s hair, babble, walk, and now, become Star PALS’s very first graduate!
Now that Lois is officially discharged from the Star PALS programme, we look forward to her next milestone. We hope she’ll be able to speak soon, with help from the early intervention programme at the Cerebral Palsy Alliance School.
I’m a great advocate of palliative care and Star PALS now. Whenever I meet other parents in a similar situation, I’d immediately start asking, ‘Have you heard of this service? Have you considered getting help from them?’
That’s how much the service has helped our family.