Nurgul was expecting her fifth child and attended Olgii Hospital for a final check-up at 8 months. The scan showed that her unborn son’s head was enlarged due to encephalitis and offered a termination. Nurgul and her husband decided to head to the capitol Ulaanbaatar for a second opinion. They decided not to terminate. When their little son was born they were told he had died during birth. A day later they were told he was alive but badly disabled and suggested the child be allowed to die. Nurgul and her husband were very happy at the news that their child was alive but angry at being misinformed. They wanted their son to live and have a life. Nurgul and her husband celebrated and from that moment onwards the whole family used their combined energies to doing the very best for their new-born baby son and brother with a significant disability. Some families in Mongolia would have taken a different view since they feel ashamed of their disabled children and keep them hidden. They feel it’s a stigma to them.
Cultural capitol, determination, and intelligence, provided a powerful platform from which to launch initiative after initiative to provide their very disabled son with the best possible chance for life. Each time I visited them there was someone sitting with him stroking his head. And each time they would tell me of a visit to another hospital in another country where a procedure had taken place and I could see for myself very tangible signs of improvement. There is a long road ahead and I can only wish them well.
