The story of HOPE
My paediatric rotation was something to be remembered with great experiences to be treasured as a life lesson for the years ahead.
It was my first day for the hospital paediatric rotation that was very interesting. I followed my consultant for a ward round that morning and she was having 2 patients with 2 different stories of hopes.
The Hope of a Mother
We went to the first patient, who was a lovely 3 years old girl that was unlucky to be born with encephalocele, a type of neurotube defect due to the failure of the brain skull to develop properly. So physically you can see she has a big bulge at the back of her head due to the herniation and protruding of the brain tissue from the open skull.
At the age of 3 years old she was admitted over and over again to the hospital due to a lot of medical conditions. The neurosurgeon team was reluctant to do any surgical correction to close the skull because they were afraid of the risk. She was also having hydrocephalus, simply means there is an excessive fluid in the brain that cause the pressure in the brain to be up, so they inserted a ventricle peritoneum shunt like a long tube to drain the fluid out of her brain into the abdomen.
However, at the age of 3, she can hardly move. She could not even sit up properly without support. She can only roll herself on the bed and cry whenever she feels pain and distress. She can’t crawl, walk or jump like other normal kids. She is developmentally behind. She can’t do what her child at her age can do. When the professional team assessed her on the developmental area, they said she is just like a 12 months girl. Not only her gross and fine motor was behind, she also has global developmental delay. Global developmental delay means that she is behind in every aspect of developmental area, not only her motor skills, but also her speech, her language, her social interaction, her cognitive function and her hearing and vision.
But here comes the story of her mother that may sound ridiculous to others, but to me it’s a story of hope. Her mother is having high expectation on her girl. She was expecting the girl to be walking someday, to be going to school like other children, to grow healthily like other kids of her age despite knowing the disability the daughter is having. She was even consulted with the professionals concerning her high expectation towards her girl to be doing well in the future. They were thinking it is a problem to the mother having so high hope towards her daughter to be living a good life in the future. It sounds ridiculous for the people who know how impossible it would be for a child suffering from the disease to be doing well in the future.
It seems ridiculous but deep down I know that it is the hope and the thinking of seeing her daughter will be doing well that keep the mother going. That light of hope she was glowing in her heart and mind is the only thing that keep pushing her to go through the hard times she is having. It is not easy to bring up a kid with disability. It is more than difficult and she is strong enough to put up with every difficulty. When she was telling the doctor about what her girl is able to do now, I can see in her eyes that she lives by the hope. She was telling the doctor, ‘ Oh doctor, she went to school today and she was very happy’. ‘Oh doctor, she can now bend her knee trying to crawl’. ‘ Oh Doctor, she can now raised he arms higher’. She is telling the doctor every single improvement that her daughter is making in term of development even it looks very minor. That little improvement that the daughter has made is like a burning fire that lighting the hopes in her.
The boy with the incredible brain
Then we went to see an 11 years old boy that was paralysed on the bed not even smiling or showing any facial response to us. He is immobile. He can only lift up his hand and go as far as his head. He was hospitalized this time following an episode of seizure due to feeding. He was having recurrent seizures mainly after feeding. Can you imagine everytime you try to enjoy your meal, then you brain activity goes out of rhythm and causing you seizure. The Consultant was suggesting to feed him using PEG tube (a tube inserted through a small incision in the abdomen into the stomach and the food is delivered to him by this tube) if he cannot tolerated feeding normal feeding. But then the sister who was waiting for him that morning said,
‘ But he really loves eating. He enjoys his meal very much’
It sounds really sad to me thinking about the only thing that he enjoys doing will be taken from him now. The Consultant decided to put him under observation and asking the sister to feed him after this and they will see if it causes seizure or not. If it does, it means no more happy meal for him.
He used to be a bright normal kid just like others. He can walk, run, jump and play with his friends just fine. Unfortunately, the tragedy in 2008 took that away from him. It took everything away from him. He had a traumatic road traffic accident 2 years ago, but he managed to survive.
It was actually a dread tragedy; he was brought to the hospital with extensive brain damage following the accident. He spent months after months in the hospital. However, he managed to pull through the critical period.
When you look at the scan of his brain, you’ll be amazed, how this boy has survived. He really has an incredible brain. The accident has damaged the whole half of his right brain hemisphere. It wasn’t that traumatic when you look at the scan taken in 2008 following the injury. The latest scan was however amazing. Basically, half of his brain is gone. His right hemisphere was damaged, causing the midline shift of the left hemisphere. With time, the left hemisphere started to fill in the empty spaces in the right but it is not big enough to fill it whole, so the fluids of the brain started to fill in. When you look at his brain scan, you can’t really tell whether it is a brain or not. It is far from normal looking. There’s no way you can tell it is a brain. All the normal structure of the brain that you learn and remember by hard in the anatomy class in 2ndyear, it was all gone. It is completely abnormal. Subhanallah, it’s amazing how he managed to survive up till now.
When he was in the critical time, he was comatose for quite a long time, and the family themselves was shocked when he regained his consciousness. Deep down, the family was hoping he did not survive it all because the damaged done was severe enough. The family was not hoping for him to survive because they know he’ll be bedridden for life. The aftermath of the accident was just catastrophic.
But he survived. He is indeed a survivor. When the whole world did not wish for him to survive, he did survive.
It is not the hope of others that push you through, it is your own deep burning fire of hope that keeps you moving.
The boy and girl might not even have any chance to walk like others giving their circumstances, but they will keep on living. They have hope, so do I. We live by hope, we survive by hope.