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.