The mother was a licensed practical nurse. When I first met her she was like many people in their 20's, nice and easy going but looking for that right person for a spouse. You've seen this picture before: She found her dream guy, they married, bought a house, and began to plan a family. The pieces of her life were falling into place, her dreams were becoming reality.
But then life threw her a curve. Her first child was born with Rubinstein-Taybi syndrome, a syndrome characterized by broad thumbs and toes, developmental delay, and an average IQ of 51. Like many babies afflicted with this syndrome, hers had feeding problems, frequent respiratory infections, and gastroesophageal reflux, adding up to a baby who was a real handful to care for. In addition to the infant problems, there was the knowledge that this baby would never be normal and would likely always need her support. This wasn't how the dream was supposed to go, and it showed in mother's eyes.
To be honest, there wasn't much I could do for her. Sure, we did our best to minimize the reflux. I think we sent him to physical therapy, although in these cases that is more to give the family something to do than to significantly affect the final outcome. Mostly, though, the mother had to deal with this irritable, delayed baby on her own.
Like most people, I have great sympathy for such parents. It's bad enough that he had health problems as an infant, but the fact that there was no hope he would become normal, like she had dreamed of, was probably harder on her than his current illnesses. We expect when we are pregnant that everything will turn out fine, but there are no guarantees of that, and it can be a bitter pill to swallow.
It is difficult to compare people's suffering, but I suspect it is harder for parents of children with known unfortunate syndromes than it is for parents of very small premature babies. With most of the premies there is at least the hope that the child might catch up and become normal, but with kids who have, for example, Rubinstein-Taybi syndrome, the suboptimal neurodevelopmental outcome is certain. Unless and until those parents make a quantum adjustment in their aspirations for their child, life must seem dreary indeed. I don't envy them.