Child-Help International wants to use the Netflix’s documentary “’Rooting for Roona”, to create awareness for hundreds of thousands of children in the same situation.
The documentary follows the journey of Roona Begum from rural India who had developed hydrocephalus. Due to the lack of timely surgery, her head became extremely large. Roona, who made international headlines after images of her condition first appeared in 2013, passed away in 2017 at her home in a village in northeastern India. The documentary is a moving love story of parents fighting for the best care for their disabled child.
Unfortunately, the condition of Roona is not an exception. We estimate that around one million children are born with or acquire hydrocephalus and spina bifida (a related condition). The large majority of these children are born in developing countries where access to neurosurgical treatment is unavailable.
The Netflix documentary highlights the issues of lack of awareness and access to surgery for the majority of children with hydrocephalus. However, we have to be honest, the late treatment of Roona could never have resulted in giving her a normal life as the documentary states. Timely treatment would have really improved the quality of life of this little girl and would have prevented the immense growth of Roona’s head. She is, with her large head, a witness to a health system not providing the necessary and timely care. A health system that does not even recognise the global scale of this issue, as these children do not even appear in official statistics.
If the head was still growing, the late surgery was still justified but could not to cure the child. The treatment stops the growth but all occured brain damage remains. The hope that the parents were given for full recovery was false.
The message should be that all efforts should focus on early detection and access to timely surgery of all children with hydrocephalus worldwide.
Roona gives a voice to the hundreds of thousands of children worldwide in the same situation. Child-Help hopes this is a wake up call for the world because these children are victims of a failing health system.
What is Child-Help
Child-Help is a group of charities focusing on the treatment and rehabilitation of children with hydrocephalus and spina bifida. Currently working with about 50 partners in 29 countries, Child-Help provides support and medical equipment to follow-up about 20.000 children with these neurosurgical conditions.
Child-Help has contributed to the early detection and treatment of more that 70 000 children with hydrocephalus in developing countries.