Monday, September 10, 2012

Oromandibular Limb Hypoplasia

Oromandibular Limb Hypoplasia

My son was born with no feet, and with missing/small fingers. He was also severely tongue-tied, as he was born without a frenulum.

Shriner's Children's Hospital of Philadelphia diagnosed him with Oromandibular Limb Hypoplasia when he was 3 months old. Prior to that, we had no real diagnosis, just guessing.

He had reconstructive surgery on his tongue at 11 months old. He currently receives Occupational Therapy once a week and Physical Therapy twice a week.

There are none.

Personal Story:
I found out that Kayden did not have any feet when I was 13 weeks pregnant. After that, the doctors accused me of being a drug addict and monitored my pregnancy as a high risk pregnancy. (I am not & have never been a drug addict, this is just how the doctors chose to treat me because they have never seen his condition before.) When Kayden was 3 months old and we finally learned of the name of his "disease", (it is classified as a rare disease) I immediately starting searching for anything else I could find on it. To date, the only information I can find is two people in Columbia, unrelated, with his disease and one little girl in Georgia who was adopted, whose story is online.

Contributed by MOM Alyssa Johnston

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