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Peter Pan's World

We recently did a surprise visit for a child who had a brain malignancy which was in the palliative stages. I met this little princess when I was a house officer and saw her again in the wards as a medical officer. She was a princess always in pink with a little wand and she'd call me her favourite 'backside' doctor because as part of our oncology rounds, we also examined the child's bum for tears or fissures which could be possible avenues for infection.

Her illness progressed and one day, I received an audio message from her. She said she missed me and would shed tears of joy if she saw me. (She was barely five but she had a maturity of expression beyond her years that these children acquire through their experiences). I visited her in a tiger mascot outfit and boy was she pleasantly surprised when I took the head of the mascot off! That was a poignant moment which I will always remember amidst the many I've shared with these special children and their families through the years since I was a medical student.

What struck me most was a conversation I had with her mother.

"Our princess mentioned she wants to go to heaven. And that she would have fun on the other side and be happy with the other children. We were planning for the funeral and when she saw the undertakers she asked us if they were the angels planning for her party to go to heaven. She wanted a beautiful dress and to look like a princess. She also said "mummy don't be cross if I don't remember you. I will try to ok."

Sometimes we think that children live in a fairy tale world with no concept of death, but over the years, I've met and heard of young children, in their palliative stages, expressing that they are ready to embrace the next phase. It is not an end but rather a new beginning into a world where there is only happiness, love and laughter with no suffering, needles, chemotherapy or radiotherapy.

These children formulate their ideas of a heaven filled with angels in a creative manner. To some, it is a playground where they will meet other children like them. To others, it is a place where they can meet their grand-parents, pets or other siblings they have lost. At a paediatric palliative conference in Italy, a team from Harvard shared how some of their patients express their vision of the next phase through art and drawings. Some children drew an entire heaven full of animals, stars, many colourful balloons and even their families whom they hope will visit them someday.

These children have taught me that no matter how bleak a situation may be, there is always a candle to hold on to amidst the darkness. It takes away their fear of moving on to the next phase of life, comforting them and their families knowing that they have something special and intangible to look forward to.

There are times when I look back and remember these children and the brave fight they put up. They are little martyrs and their stories will always be told, raising awareness for other children and their families who share a similar tumultuous journey. It is not easy for a parent to endure the final moments with their child, often filled with uncertainty, grief and a mix of emotions only those who lost a loved one will understand.

When I was a medical student doing an elective in Canada, I was with a child who had a complex congenital heart condition in her final stages. A family conference was held and I remember being there by her mother's side. She passed on shortly after and her mother invited me for her funeral. This was a special one because at the end of it, we went out of the church and released a sea of purple balloons into the winter night sky in hope that she would see the magical send-off her parents had planned, fit for a princess.

A child's passing on is special. It is part of their journey through life and it does not end when they leave our world. Ever heard of Peter Pan and the lost boys? The lost boys are none other than all the children who have passed on. They live in an eternity with all the children who have moved on from our world to Peter Pan's world; a world where good triumphs over evil, a world where there are fairies and mermaids and a world where children can be, simply put, children.

The child's parents often arrange a majestic send-off into Peter Pan's world so that their children will remember them even in years to come. That is the purpose of memorials which Star PALS (Paediatric Advanced Life Support) conducts every year and each children's hospital around the world has their own version. In Great Ormond Street Hospital, there is a huge chapel within the hospital premises filled with teddy bears, toys and gifts bearing the names of children who have passed on. When I visited the sanctuary during my stint in the UK, I saw parents laying bouquets – in remembrance of their children. The power of remembrance is important and is a two way wish, carrying their own hopes that their children will remember them too in Peter Pan's World.

While writing this article, I changed the title three times. It started off as 'What's On the Other Side?', then became 'Tell me what does it look like in heaven?' and finally, I chose 'Peter Pan's World'. Likewise, the world of paediatric palliative care is continually evolving as we gain a better understanding not only of the trajectory of both acute and chronic illnesses but more importantly the physical and psychological journey these children and their families embark on. 

One day, when you are walking along an empty street with a clear night sky and you see a sky full of stars, I hope you'll remember that on each star sits a child who was once upon a time in our world and is now in Peter Pan's world. Peace. 

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With our Star PALS nurse Serene and one of our dearest princess (picture used with permission from the family)