My name is Sarah. Fairly new follower of the page but i thought I would share my story.
I am 28 living in PA and have 2 wonderful daughters, Marah, 2 and Leah 9 months. I found out when I was 20 weeks into my pregnancy that I was having a baby girl, but my baby girl would be born with a bilateral cleft lip and palate. The initial shock was overwhelming, neither I nor my husband have any family history of clefts. After the initial shock and tears subsided, I went into research mode. I am a RN but do not work much with pediatrics or clefts. I searched the internet trying to stick to the more reputable web sites, but it was still overwhelming and a bit scary. Sometimes knowledge is power, other times knowledge will drive you plain nuts! :-)We were able to meet with the closest Cleft-craniofacial center in Pittsburgh, PA and were very impressed. The staff was wonderful and their results were amazing. They used the NAM procedure.
Jump forward to Oct 23 2009-Welcome Leah Marie! Leah was born weighing in at 7 lb 14 oz. Our small hospital was nervous about Leah’s cleft and sent her to the intensive care nursery. Leah proved her strength and stubborn nature right from the start and was drinking like a pro from the Pigeon bottles provided by the cleft center.We made our first visit to Children’s Hospital in Pittsburgh when Leah was 4 days old. At that time they took impressions and fitted her with her NAM plate. The NAM was pretty intimidating at first, and time consuming throughout. We made weekly trips to Pittsburgh (about 2 hours 1 way) to have the NAM adjusted. As Leah got older she learned how to pull the NAM out with her hands and flip it out with her tongue. I spent ALOT of time putting that darn thing back in for her to pull it out 10 minutes later! But it was worth it! The change in Leah from birth till pre-op was AMAZING! She had her lip repair at 5 1/2 months on April 13th 2010.
While the repair was wonderful, I missed her big grin! We are now about 4 months post surgery and she continues to look more amazing every day! She is a happy, strong, and sometimes downright stubborn little girl!We are scheduled for her palate repair on November 30th, which has got my stomach in knots all over again. But she is strong, stronger than me most times and we will do great!