After enduring weekly sonograms for the last month and a half of my pregnance, and only being told I was carry a large baby, Damian Frances Rodriguez was born by c-section on February 11, 2011 weighing 9 pounds 15 ounces, a big baby indeed! My husband and I only briefly noticed there was something wrong with his hand before he was whisked away to NICU for breathing difficulties. I was not able to see him for an entire day. When I was finally allowed to go to the NICU, I noticed all of the tiny preemies and then saw Damian – he looked like a Sumo wrestler compared to all the other NICU babies! My family was busy researching what could have caused his small hand while the hospital staff told us nothing except all our speculations were wrong. His left side was comprimised somehow, but the doctors did not know why. My mother recall, however, staring into Damian’s big beautiful eyes and having the strongest feeling he wanted to smile but of course, was too young. Now we know he never will.

A few days after we came home, Damian was back at Vassar Hospital with RSV. It was severe enough he was transported to Westchester Medical Center where he stayed a week in Pediatrics Intensive Care. At the time, we still thought Poland Syndrome was the only issue. He did have trouble feeding – we were told he was tongue-tied, but by holding his chin, he could take formula.

Moebius Syndrome with Poland Sequence was not mentioned until Damian’s three month doctor’s visit. She noted Damian’s eyes were not tracking and consulted an ophthalmologist. He left the room for a few minutes (surely to check his computer with his suspicions) and returned with the diagnosis of Moebius with Poland Sequence. Damian began a round of doctor visits with a geneticist and a neurologist, both of whom simply examined him and gave still us little information except nothing could be done.

Damian has had extension intervention services. While his developmental markers are slightly delayed, he is a thriving two year old. He not only walks, he runs and climbs and wants to copy all his older brother’s antics. His vocabulary grows by the day, and he is beginning to speak in sentences. He will probably have surgery on his webbed fingers shortly to try to create some opposition with his thumb with his left hand. There are some feats he is still trying to master with his small hand, i.e. holding the bottom of a zipper while he pulls it up or down. He still has trouble drinking from a cup.

Our son has a contagious laugh. He is an adorable boy – an absolute joy for both of us. His lip moves down slightly when he laughs or cries; otherwise he has total facial paralysis. We were pleased to be able to attend the Moebius Syndrome Conference in Philadelphia this summer where we learned so much about his condition and were pleased to meet others who had actually  heard of it. Damian has an older brother as well as a loving extended family that rejoices at each reached milestone. At two years old, his in ready for adventure and fun, and we face the future with hope.

Kristen Oassalacqua Rodriquez