Little P was once a statistic.
P was born premature and with hydrocephalus, which is the buildup of too much fluid in the brain. After a poorly done operation to install a shunt to drain the fluid that had accumulated around his brain, his mother hid him at home. His older brother also had a disability, and their mother was afraid and ashamed, blamed by her husband and stigmatized by the community.
P’s life was saved by preventative health screenings done by a local NGO, when he was a year old and weighed only one kg. The doctor declared that if they had waited another week, he would have died of complications from malnutrition, pneumonia, or diarrhea.
Now P is receiving the medical treatment and support he needs. He weighs almost seven kg and just celebrated his third birthday, but still looks as if he is three months old. Developmental checklists put his mental abilities around those of a 6-9 month-old.
P is a global health success story. One of the Millennium Development Goals is to reduce child mortality. One life of a child under five saved to add to the tally.
But what happens to P after he turns five? What does the future look like for a child with such fragile health and major developmental delays, who will likely need significant support?
The focus on newborn and child health interventions by international organisations in the past decade is laudable and important. 40% of child deaths occur within the first 28 days of life. The Lancet Neonatal Survival Series highlights initiative like Helping Babies Breathe, which show promising results that could mean the difference between life and death for millions of children. They are addressing a large and real need, recognizing that the “Golden minute” is critical for babies to survive.
Birth asphyxia, low-birth weight, cerebral malaria in infancy – all of these causes of neonatal deaths are now health problems we know how to address in successful and cost-effective ways. They are also leading causes of intellectual/developmental disability in parts of the developing world like sub-Saharan Africa.
As more of these children survive, the international statistics on infant and child mortality will drop, but the number of surviving children with disabilities is also likely to grow. Yet, one does not see services for people with disabilities high on the priority list of the major global health and development organisations.
Why did we make such an investment in saving these lives if we were going to abandon them after they pass the age to count in the official statistics?
This is not a problem unique to the disability community; it is a disturbing trend in the global system. What good is it to push children into primary education and parade higher attendance rates without supplying their schools or providing them with a good transition plan for further education, training, or employment when they are adolescents? What good was it to shut down that brothel without providing the young victims of sexual exploitation the type of sustained psychological and economic support they and their families need in order for them not to re-enter that system as adults?
The answer is that the development system is currently too structured around short-term project thinking. Metrics and statistics are important, but they cannot afford to be shortsighted. It is morally irresponsible for the global health and development community to work so hard to save these children and then not work towards more robust and equitable education, health, and support services for them.
These lives are precious. They deserve to be saved. They also deserve not to be forgotten. Behind every global health statistic are flesh and blood children like P whose stories do not end with a “Happily Ever After” just because a development project has met its target and can write a pretty number in a donor report. Their lives keep going, keep developing, and so should we in finding ways to support them.