Brenda
Hi Amy- My granddaughter was born w/p.s. syndrome in '93, she had severe physical deformities, she was born in a small hospital & flown to Cardinal Glennon in StLouis Mo for diagnosis & care, she had 11 specialist & was in neonatal intensive care on a respirator. We couldn't hold her except on a sheep skin board because her bones would break, her legs broke just from handling at birth, she had no muscle in her body, cleft palate so she couldn't nurse, was fed intraveinously. They told us she wouldn't live more than 1-3 days but she lived 6 days & died in our arms, knowing she was loved. The dr.'s also said she was blind & deaf, but we could tell she knew us. We were told it was caused from "repressive" genes from both parents & very rare because few people have them but the chance of 2 having a child together is very rare, but my daughter did. Her name was Lacie Breann. The father had a son 2 yrs. later & he also had deformities, but not nearly as severe & he survived. My dau. has had 2 more children & their perfect[both w/different partners] I did alot of research on the syndrome but it was hard to come by-Lacie was the 1st baby at Card.Glennon to have this it was so rare. How severe is your son's condition??God bless you!