Adoption 12. Another private agency I would help to find familys for and continue to do so ,was out of Texas. I received a call from the adoption worker for their special needs program , she had a African American baby girl she needed to place. The Doctors said she may have a syndrome but she really felt she would do fine and might go in her regular program. I looked up the syndrome , it was called Coffin Sirus Syndrome its a rare genetic disorder that causes developmental delays and absent tips of the fifth finger and toenails. As infants they may have feeding difficulties , frequent respiratory infections, low muscle tone, course facial features and many more anomalies . I sent information on the syndrome to the adoption worker and told them if they were going to place her in the special needs program we would be interested. We named her Gilliah Rose , Gilliah means joyful. Gilliahs birth mother was very young and when she left the hospital she never inquired about her again. When Gilliah came to us she had trachomalaysia ( floppy airway) which required her to be on oxygen. She was able to outgrow that need. She developed like a typical baby for her first 12 months. Other then her missing 5th digits . Most of the Doctors we saw thought nothing was wrong with her . Over the next year the delays began to show, Gilliah did not talk until she was almost 4 and today is still hard to understand . Her cognitive is more like a 5 or 6 year old. She had severe constipation and at 7 was finally diagnosed with hershbrungs disease ( where the nerves in part of the intestine are missing) she had surgery and had a colostomy for a year. Gilliah has many sensory issues and at times they make her behavior challenging, as she is getting older she is learning to control some of those behaviors . Now almost 17 she is a sweet young lady who enjoys family activities and her special education class at school.
Posted on: Fri, 14 Nov 2014 02:16:05 +0000
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