Immediately
after birth, it was obvious that she couldn’t breathe. On her
5th day of life, they diagnosed the problem – paralyzed vocal
cords – and she had a tracheotomy. During the next 3 weeks in
NICU, it became obvious that she had other serious physical and
neurological problems. A blood test confirmed their suspicions
that she has a rare genetic disorder named Williams Syndrome.
She came home from the hospital requiring round the clock
nursing care and an entourage of medical equipment had to always
be with her.
Rachel attended a sensory-integration therapy clinic originally founded by the world famous Jean Ayres. In 2001, we moved so Rachel could attend a Pediatric Day Health Care facility (medical day care) and she blossomed under their care – the staff and clients are very special to us. In July 2003, Rachel had an endoscopic Cricoid Posterior Split with Rib Graft surgery by Dr. Andrew Inglis of Children’s Hospital-Seattle which opened up her airway and allowed her tracheotomy to be removed. This has dramatically increased the opportunities available to Rachel because she no longer has the risk of suffocation or need medical equipment to travel with her, and can now attend public school. Dr. Inglis totally changed her life. He is the only doctor performing this surgery endoscopically and can be reached at (206) 987-3468.
Rachel is mildly mentally retarded with very scattered strengths. At age 6, she is the equivalent of 2 1/2 in fine and gross motor, age 3 1/2 developmentally, and age 4 1/2+ in speech. She receives occupational, speech, and APE therapy and is in an all-day learning handicapped (mild) special day class. Due to attention problems, she is not mainstreamed, but does spend 20 hours per week in an after school program with typical children.
Coping with her intense medical, developmental, and behavioral issues and the limitations she has put on our life has been challenging. We love our daughter and have made great sacrifices for her.
We would love to hear from any family who has a Williams Syndrome child with any kind of vocal cord problems. You can e-mail us at krowe@san.rr.com.
John and Kathy Rowe – Southern California