Billy is a young toddler who we first met well over a year ago. We were asked to see him by a group of health promoters with whom we collaborate closely because he “wasn’t growing.”
When we saw him, we immediately noticed two things. First, he had Down syndrome, one of the more common genetic disorders. Second, he had a very loud heart murmur and looked like he was suffering from significant heart failure.
Upon closer questioning of his mother, it turns out that his heart murmur had actually been diagnosed by a local clinic shortly after birth. However, the doctor who discovered the murmur had told the mother that since Billy was a “special child” it was better not to do anything about it.
Fast forward two years – and Billy is severely malnourished and in serious heart failure, all because medical staff had made a peremptory judgement about what was and was not possible for a child with special needs. A judgement that was exceedingly unjustified, both because we know that children with Down’s syndrome can lead extremely productive and high quality lives and, also, because with further investigation we discovered that Billy’s heart defect was a patent ductus arteriosus – one of the most common and simplest to repair.
Last week, Billy finally had surgery, we are delighted to report. Why did it take a year to get the surgery done? Well, first because Billy was so nutritionally devastated that it took our staff a good six months to help rehabilitate him. And, second, because the his mother had lost so much trust in the medical system after her first encounter, that it took several months to build a relationship and reestablish trust. In all, our staff devoted some 200+ hours of time to this case – both direct medical care, and also advocacy, relationship building, accompaniment, and the like.
At Wuqu’ Kawoq, we are delighted to help facilitate such cases, and we strongly committed to providing excellent medical care–especially to “special” children.
* Billy’s parents have given us permission to tell his story and use his photo.