This is a very rare disorder: 1 in 10, 000 due to an x-chromosome linked genetic disorder. Feeding
is a problem, esophageal reflux
is common, and death is sometimes due to malnutrition.
Here is a national institute of health link: http://www.Ncbi.Nlm.Nih.Gov/pubmedhealth/pmh0002503/
i've never seen a case and few doctors have. I sympathize with your child's condition. Good luck.