Shaon, 13 months 2 days old boy was born in a rural village of Sylhet, Bangladesh. 300 miles away from the town.
His teenage mother was shocked and traumatized when she first saw the bays face. His father, a 28 years old very simple man who mainly looks after his parents cattle and small scale agriculture work.
Shaons mother has seen many baby’s born in her village but not like her own child. A gap in the lip and palate, made her wonder what these miracles were.
The baby was crying and crying relentlessly , struggle of his life and his mums harsh reality begun here.
One morning, 4 days after his birth when his mum was trying to feed milk he chocked and became blue. The local quake visit the home as an emergency and advised rightfully to transfer the child to nearest hospital in town.
The paediatrician attending the shift made the diagnosis of cleft lips and palates. Sahon was admitted for few days and received treatments for aspiration pneumonia and had NG tube feed.
The NG tube fell out few days after but his mum adopted a mechanism how to feed safely, though he had few episodes of chest infection which was managed by a local quack.
After 13 months , the grand parent saved some money and decided to take shaon to Dhaka , capital city to visit a surgeon who was doing cleft lip surgeries free of cost.
The surgeon saw shaon and advised to get his hear checked.
Waiting for 2 days Shaon was seen by a heart surgeon who confirmed Shaon has a very complex heart condition known as Pentard of Tetrology means five major problems in his heart.
The heart surgeon explained,” it is a serious condition , needs urgent operation with a huge cost and high risk of dying from the operation if done within the country”. The Surgeon is right and has given the right professional advise. For him shaon is one of the many he sees daily.
Sahons mother and the grandparent is devastated about the news, now cleft lips and cleft palates are the minor issues for his life and for the surgeons it is the heart needs fixing first.
Instead of going back to the cleft lip surgeon shaon returned to his home village the following night.
Shaons grand parents and mother are all in a helpless saga of life and now wanted to make him comfortable as much as they can. Cuddle him the remaining months he has, it is all too complicated and impossible for them. whereas it is suppose to be the state to get him all the right thing to correct all these correctable anomalies.
This is one example but many more of this shaons stories we hear daily.
From all this and from all the experience we all know affordable care, care for all and or the welfare system can be the solution only. Its all hard a cruel reality of our daily lives, but their has to be a solution.
Shaon now might get his heart operated, if lucky he might get a smiley face afterwards. But those Shaon’s who are unknown how do we care for them or share the agony of their parents and relatives???
Affordable health care for all is only the solution.
14th February 2018: shaons journey to National Heart foundation Dhaka, Bangladesh
Underwent complex 8 hours Cardiac surgery under Professor Abul Kalam Shamsuddin ( many thanks to his kindness and great empathy)
After 10 Days stayed in NICU ventilated and successfully extubated
discharged home with uneventful recovery on 12th March 2018 with 4 weeks follow up appointment
This is an example how screening, counselling, and on going support can save human life
little shaons Bravery is an example how we can overcome lots of social stigma and shed some lights and hopes
his parents smiley face and joy will be remaining in this world for the days and years to come in sha Allah
Thank you Dr Shamsuddin and Dr Helal Uddin for your kind cooperation and great skills
London 29th April 2018