Lilly’s Letter

Alexis GiannattasioAdult, Community Stories, Family Stories

Hi, my name is Lilly Piazza.

I grew up in southwest Louisiana and I am 49 years old. My story may be a little unique, because to be honest, I’ve never met or heard of anyone else with my type of cleft. I’m sure they are out there, I just haven’t heard of them. I was born with a cleft of both the hard and soft palate, but no cleft lip. By all appearances you’d never know I had a cleft palate. I had the palate repair as an infant, but obviously I do not have any memory of this. I also had extensive speech therapy for over 7 years. I remember speech therapy very well and it has come in handy with my youngest Granddaughter.

I have 4 beautiful Grandchildren, 3 of which were born quite healthy. My youngest Granddaughter, Harper Jo, was born with a different type of facial anomaly called hemi-facial microsomia. Everything on the left side of her face is smaller than the right. She was also born with laryngomalacia. She is 3 years old now and just beginning to talk. I bring her to speech therapy twice a week and we practice at home. So, my personal speech therapy experience has helped tremendously. I can’t help but wonder if our 2 “birth defects” are related somehow. Only in my adult life have I heard of “Stickler’s Syndrome”. I can see I have one or two characteristics, but not all. My Mom was told I had Pierre-Robin Syndrome when I was a toddler, but again I do not have the characteristics. I’d love to know for sure, but I have no idea who to ask or see for a definitive diagnosis and at my age I guess it doesn’t matter.

Despite being born with a cleft, I’ve lived a very “normal” 49 years with no more or less trauma than most children. I worked in the medical field as an EMT up until my hearing degraded, and I worked in surgery as a scrub assistant for a few years. I was told I would probably never be able to do either of those jobs, but I did it and I loved it! I began having musculoskeletal issues early on and have had 4 knee replacements and no longer am able to work. My Parents always encouraged me and told me I could do anything, and I followed my dreams.

I love seeing the faces of beautiful babies born with clefts, and I know that with today’s advancements in medicine, they can achieve all things!

Thanks, Lilly