This is Ben. He is 5 months old, and he has Cornelia de Lange syndrome. He is very small, weighing less than 10 lbs, which is typical for infants with CdLS. He is unable to take anything by mouth because he doesn’t suck or swallow well, and had problems with severe reflux. Earlier this month he had surgery – a Nissen fundoplication (to correct the reflux) and a gastrostomy tube (for feeding). He has done very well – he no longer throws up after every feed. Overall he has been very healthy.
He is a very good baby. He doesn’t usually cry unless there’s a reason (e.g. gas, a dirty diaper, hungry). Out of all our kids he is the best nighttime sleeper! Since birth he has slept through the night. One of the few advantages of having a tube fed child is that we have never had to wake him to feed him overnight – his feeding pump runs all night long. He actually gets the bulk of his calories from his nighttime feeding. He is definitely a morning person – that’s when we see most of his rare smiles!
Because of his developmental delays, he gets physical and occupational therapy twice a week at our home. His therapists are great! We also hope to have Ben go soon to a special feeding clinic to learn how to eat by mouth eventually. Ben also has mild to moderate hearing loss and was recently fitted with hearing aids. He seems to like these and is definitely more responsive when he wears them.
Right now he is downstairs watching baseball on TV with his Daddy…..