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Teresa Stafford Teresa was born July 14, 1977. The doctor's expected date for Teresa to be born was around the third week of August. Teresa weighed 4 lbs. 5 ozs. at birth. At first due to her small size the doctor was sure she was premature. In just a few hours after birth, the doctor told us, "There seems to be some problem, she is having trouble breathing. Due to her small size and low birth weight, she may have some type of birth defect. I will have to confer with some specialist and get back to you as soon as I can." He also stated he didn't want to scare us but that she might not live long. We were devastated. How could this happen to us? Why did God put this on us? The next day was awful, we didn't know what to do. Our family and friends were very supportive. At birth she had so much hair that the nurses would brush it and put bows in it. She was so small the diapers didn't fit well and she would wiggle out of them. The nurses nicknamed her Eve.

Finally the doctor called us to come to his office. He told us he had talked to a colleague that he went to med school with and they agreed that Teresa might have Cornelia DeLange Syndrome (CDLS), he wanted to get a geneticist in Nashville at Vanderbilt Hospital to examine her. After 28 days in neo-intensive care and several bouts with her stopping breathing, we took her home. We scheduled an appointment at Vanderbilt as soon as possible. After a day of gruesome test, x-rays and examinations by several doctors, we were told that they were sure she had CDLS. During Teresa's hospital stay we contacted, The March of Dimes, Crippled Children's Association and later the CDLS Foundation. The information they gave us was general and painted a very bleak picture of what was to come.

Teresa had a heart murmur at birth but now the doctor can't hear it. The valve at the top of her stomach didn't close and caused her a lot of trouble for about the first year. Now she eats almost everything. (Mama still cuts her food into small pieces though.) Teresa's eyebrows connect and she has several other classic features of CDLS. She has never walked, but can scoot all over the house. She is usually happy (if you keep her music going). The only word she says is MA...Ma. We are all called Mama.

Even with her birth defect Teresa has been healthy, very seldom sick. Even though she has had her problems when she laughs with her coarse laugh and looks at you with those beautiful brown eyes and long eyelashes, there is a love I can't describe or explain. A love that no one else in the world can express. Now we know why God gave us Teresa, because there is no other way we could experience the love and joy this special girl has taught us. Sure, it has been tough these 21 years, but we don't regret a single moment and enjoy each day as best we can and take one day at a time.

Terry Stafford (Teresa's Dad)


For more information about Cornelia de Lange Syndrome
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