Condition: CHARGE Syndrome
City, State: Bend, OR
Club: Lava Ridge Elementary Sparrow Club Service Hours:
Date Adopted: 12/13/2013
Nicole and Michael were happily expecting their first baby girl. A routine ultrasound at 20 weeks showed that their little girl had an issue with her heart. As the weeks progressed and tests were continued to monitor the baby’s heart, more heart defects were discovered.
Because of the seriousness of her heart issues, Natalie was born in June 2013 at Lucille Packard Children’s Hospital in California. Immediately after she was born, she was put in the NICU and placed on drugs to help keep her heart going. At 12 days old, she had a 12-hour open heart surgery to repair some of the damage to her tiny heart. Ten days later she developed an arrhythmia and was put on medication to regulate her heartbeat.
Unfortunately, the problem with her heart would not be the only issue that little Natalie would have. Three days after she was born, other problems arose. Genetics became involved and shortly after, Natalie was diagnosed with a condition known as CHARGE syndrome. It is a sensory deficit disorder that stems from the cranial nerve. It has several characteristics, some major, some minor. Only one in ten thousand babies are born with this condition so it is very rare. Some of the problems that Natalie has developed are vocal cord paralysis making it difficult to swallow, vision loss in her left eye as well as hearing loss in her left ear. She only has one airway in her nose and left side facial palsy.
Natalie is just a few months old. So far she has spent more time in the hospital then she has spent at home but her parents are hoping that will change soon. She will need several surgeries to try to correct issues with her breathing, her heart and her ears. These will be done slowly over time. Currently she is being fed through a feeding tube due to her vocal cord paralysis. She is very immune suppressed and must not get sick due to having only one airway in her nose.
Sparrow Cash raised for Natalie will help pay ongoing medical expenses and travel expenses to the hospital in California.