Special Children

In our child health project we have designated children with disabilities due to birth injury, deafness, blindness, epilepsy, HIV/AIDS and chronic conditions as Special Children. In small isolated rural communities such children may be kept indoors, regarded as bewitched and the parents shamed or blamed. One of the tasks of our community volunteers, called CORPs, is to identify such children and to work with the community to have them accepted and assisted by the community. Orphans who have lost one or both parents and severely malnourished children are also included.

The urgent field interventions such children needed often required small but necessary input such as avocados, milk and protein-rich foods for the severely malnourished. A donor supplied a small fund for such interventions so they aren't delayed by the elaborate procurement process required for other purchases.

On Tuesday, the project vehicle took our two research assistant up the mountain for the monthly meeting of the CORPs in one parish. The research assistants are collecting annual information about children under five. Two of the visiting pediatricians, one a pediatric neurologist from the UK who is here for two weeks and has been teaching post grads and students on the ward, went along. They ate the noon meal with the CORPs, listened to their songs, sat in on their training session and answered questions.

A 4-5 month old child who had congenital cataracts was brought by one of the CORPs from a nearby village for their advice. The pediatricians recognized that the child was at the upper limit of age when the cataracts could be removed and sight established. Left much longer, the ability of the child’s brain to begin processing visual information would be lost and even if the cataracts were removed later, sight would never be established. When they asked how to arrange for the needed surgery, they were told that the family and community would need to raise funds, the mother had never been to Mbarara and would need to be escorted, appointments would need to be set up, the father would need to be convinced as he had accepted that the child would be blind for life etc. All were legitimate objections.

The pediatric neurologist is a mild, gentle, unprepossessing man with little experience in Africa and on his very first community visit.

“We decided to push the system”, he tells me later, adding dramatic emphasis to push the system. “We put the mom and child in the vehicle with us at the end of the day, drove down the hill and delivered them before dark to the Eye Hospital in Mbarara."

"You absconded with them?" I ask.

"Well sort of," he grins. "And the surgeon is going to operate in the next couple of days and he is going to do it for free! Luckily enough, your driver knew staff at the rehabilitation project which is attached to the Eye Hospital so we were able to talk to them and arrange for them to assist the mom with accommodation and food.”

It’s a wonderful outcome for the child, the family and the pediatricians, both of whom are leaving today. We have been dialoguing during their stay about how as expatriate physicians to best make a difference in the developing world and had reached a sort-of consensus that consultants need to have long term commitments, not necessarily staying for long periods at a time although that may be helpful, but returning again and again and setting up connections and relationships.

I don’t have the name of the child with the cataracts or her mother at this point but what is more important, our driver, Abdul, can find them for me. As well, Speciosa, one of our trainers who is the In-Charge at the referral health center and who conducts the monthly meetings with the CORPs in this parish knows the family and can follow them at home. Abdul and I are going to stop by the hospital on Sunday to check on progress. And our project now has contact with staff in a committed rehabilitation project that can help us with the Special Children that the CORPs identify in the community. It’s a Win – Win situation.

At the training of new CORPs in another corner of the district, a young child with a massive, suppurating osteomyelitis of the tibia was brought for us to see. It is the worst such case I have ever laid eyes on. It is a wonder that the child is even still alive. The parents have been spending vast amounts of money on traditional herbs and now have no funds for X-ray or antibiotics.

Our Special Children Fund has criteria to ensure it is used appropriately and not spent on all the clinical needs that abound. Our staff ask me if this condition would qualify for the Special Fund, or worded differently, does an infection qualify as a disability?

I am inclined in cases of need to beg for forgiveness after the fact rather than seek permission but what they need is a justification to put in their report so I say, “Well it is a chronic condition. It has already created disability because the child can no longer walk. It is serious and getting worse. Urgent intervention is needed to save function, the leg and maybe even the life. I say it qualifies.“ They are delighted and begin to make plans with a Ugandan surgeon who has offered recently to assist with such cases.

From a community health point of view, these anecdotal clinical successes, or soon-to-be successes, are not and should not be our main focus. While they make dramatic images, I am suspicious about the committment to development of groups which communicate and raise funds by using such anecdotes. And I worry that our project is becoming more a Special Children project than a Child Health project.

The pediatric neurologist argues, rightly enough, that a comprehensive, effective, quality program for disabled children will also be a good community program for all children. A community health specialist on the other hand needs to balance need with the available resources, which for all children in Uganda are meager. We probably need a separate project for Special Children. Certainly more needs to be done. For now we will continue to use the opportunities that our access to the communities provides to do what we can. It will definitely help to have somewhere to refer Special Children when they are identified, so I will need to do some followup with the rehabilitation project. All children are special! And it certainly puts a spring in your step to think that you may be able to contribute, however peripherally, to a child being cured of life-long blindness or avoiding a limb amputation.

Photos: Child with trad herbs for skin condition; kids cutting up jackfruit; kids with millet baskets; kids in yard; Mom preparing millet with small child.