In the eyes of many medical professionals, a child with Trisomy 18 is doomed. Why bother to administer extra care? Perform heart surgery? Give the parents a reason to hope? Certainly, we experienced this attitude from medical professionals. A neurologist who saw Zane at 4 months for seizures said that his feeding issues were nature’s way of controlling the population. While this may be true, it is not something a parent wants or needs to hear when grappling with the fragile life of a child. When Zane had a gastrostomy tube placed at 7 months of age, a gastroenterologist at the children’s hospital told me how “psycho” it was that Zane was sent home under hospice care with a feeding tube. Better to starve him, was her argument.
There are many great doctors who have cared for Zane. There are many not-so-good ones as well. While Trisomy 18 is usually fatal, it is not always. And even with the shortened life expectancy of children living with the diagnosis, there should be a level of compassion on the part of the medical world when handling families such as ours.
We appreciated the neonatologist’s honesty about the statistics associated with Trisomy 18. But Zane is a living example of how the medical community is not the end-all of knowledge. They do not have crystal balls or prophetic gifts. As such, many of them should not pretend that they do. We had little or no hope for our son. With the doom and gloom presented to us, we lived in a place riddled with anxiety and hopelessness