Ellery's Story

Ellery was born September 13th 2008. She was two months early and delivered via emergency C-section weighing in at only 3lbs. 12 oz. She was diagnosed as having a chromosome deletion in her 9th chromosome resulting in a Congenital Heart Defect called Tetraology of Fallot. She had one open-heart surgery when she was 5 weeks old and finally came home in November. Five days later, Ellery went into Heart Failure and was sent back to the hospital. The doctors corrected the issue with her heart but she began to develop intestinal issues. There she laid for 2 more months on a ventilator while the doctors struggled for an answer. Her stomach grew full of gas until it got so big they had to perform an emergency surgery in her room because she could not breathe. She had a mucus plug blocking her small intestine and once removed, she received an lleostomy. Ellery made a quick recovery, but from being on her back and on a breathing tube for over 6 weeks, she lost her suck, her head was flattened and she needs continuous therapies and multiple medicines. Ellery has been home for about three months, but she has also suffered two seizures with short hospital stays. About four weeks ago she had a complete repair open-heart surgery and later will have stomach surgery to have her ostomy closed up.

Ellery is at risk for:
Mental Retardation
Seizures
flat face with hypertelorism
anteverted nares
everted lower lip
carp mouth with macroglossia