Rachel Levy
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Rachel was born a very healthy baby on 9/9/96. In 12/96 she developed severe breathing difficulties and was diagnosed with a giant hemangioma (a benign tumor comprised of blood vessels) which extends from her neck to mid-chest but is only barely visible under the skin. The tumor invaded her trachea and was obstructing her airway. She required a tracheostomy.
Rachel was put on intereferon for about nine months during which time the tumor grew slightly larger. We are hopeful that the tumor will follow its expected course which is to begin shrinking after age one. There are not any good treatment options which do not involve substantial risk
Rachel has had two severe clogging episodes with her tracheostomy. Both incidents involved her turning blue and bleeding internally. The first episode was greatly complicated by a severe lung infection which probably occurred as a result of the bleeding and required her to be on a ventilator for two weeks. We almost lost her both times but she managed to pull through and is now a happy and (except for the trach.) healthy one year-old.
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Update - September 10, 2000
After having a tracheostomy for 3 1/2 years, Rachel's hemangioma has
finally involuted enough for her to breathe on her own again! She had
daily injections of interferon until she was 18 months to keep the tumor
from growing, then it began to slowly shrink naturally. On May 1, 2000,
Rachel was successfully decannulated. She instantly learned to breathe
through her mouth and nose and had no problems speaking with only one
breath per sentence. Her stoma remained open for 4 months until a tract
repair/stoma closure surgery was performed. She now enjoys playing in
the swimming pool and sand box and going to preschool.
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Rachel lives in Dallas, Texas.
- Her parents can be reached at: Davidmargie_03@yahoo.com
