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.
05 September 2013, Our Stars
We met with the Star PALS team while we were still in hospital with our son, Timothy.
You see, Timothy had been admitted on the 6th May 2012 for aspirational pneumonia, when he stopped breathing at home that evening. My son was a special boy… my angel. He had been born with cerebral palsy and epilepsy. He was also blind, couldn’t talk, and had several holes in his heart.
Timothy was not meant to be with us for very long. From the time he was born and with every visit to his doctor at the hospital, we were reminded that his lifespan was short. At a young 16 years, Timothy had come to beat a lot of the odds, and lived a comfortable and happy life with his dad, elder brother, and was cared for by me.
The day he was admitted to hospital, it was not expected that he pull through the first 24 hours. But he fought for his life for another two weeks in the Paediatrics ICU. It was then that I was told that should Timothy survive, I could take him home and he would need an oxygen concentrator, a BiPAP machine (to assist with his breathing), and I would constantly have to keep his airways cleared by suctioning. I was familiar with the BiPAP machine but everything else was new to me, and I was afraid.
But our Timothy took another two months in the hospital. After such a long hospital stay, we were ready to go home, where he could be more comfortable and at least have more time again with him as a family. I felt encouraged when a social worker and some of the doctors from NUH talked to me about HCA’s services and the palliative care it provided for children with terminal illness. When they asked me if I would be interested to use Star PALS’ services, I said “yes” immediately, and our first meeting was a couple of weeks before we went home.
A day after leaving hospital and caring for my son at home, on my own, Dr Chong, Nurse Lily and Nurse Alice paid me a visit. I admit, that I breathed a sigh of relief the moment I knew they would be visiting because I was on unfamiliar ground, now looking after a seriously ill child who didn’t have much longer to live.
The doctors and the nurses from HCA would visit weekly and every time they came, I felt encouraged and motivated to do the best for my son. Our goal was to keep him comfortable and without any pain for most of the time.
My fears were slowly lifted as besides helping me with his medical treatments, I also received a good dose of encouragement and empathy, with real care. I was always told that the road we faced, though difficult, would never be a lonely one and that there would always be someone there to help us along.
HCA really came through on all their promises; Timothy’s medical needs were seen to promptly and professionally at all times. It was like having an extended family which sailed with us through both choppy seas and calm waters. There was always a listening ear and caring presence when Karen, a Star PALS counsellor, was also introduced to our family. My doubts on my son’s medical issues were handled most gently by Nurses Lily and Alice, who were always my bastions of comfort and from whom I drew strength. Dr Chong especially, gave us personal yet professional medical advice. All this helped me cope with the feelings of sadness, and the heartbreaking knowledge that my son was leaving.
Timothy passed away on 27th November 2012.
At no point did I feel we were alone to handle this painful journey. We spent four months with our new family at HCA, and we will never forget the kindness, the care and boundless help they have been to me and my family – and to our special little Angel Timothy.
God bless you all and thank you, thank you, thank you…