Redmond High School
Charge Syndrome
Club's City, State:
Redmond, OR
Service Hours:
Date Adopted:

Meet Natalie

Read Natalie's Story

Natalie’s medical issues were discovered before she was born. A routine ultrasound at 20 weeks showed that she had an issue with her heart.

Because of the seriousness of her heart issues, Natalie was born in June 2013 at Lucille Packard Children’s Hospital in Palo Alto, California.

After her birth, Natalie rapidly became sick and needed her first heart surgery at 9 days old. What was supposed to be a 4-hour surgery ended up being 12 hours. Her surgeon told her parents he had only ever repaired a heart like hers once in his life. The surgeon had to re-plumb her heart by doing an atrial switch.

Natalie’s parents were told she had a low probability of survival, and that the first 48 hours were critical. She made it the first 48 hours but had so much swelling and fluid retention, that doctors left her chest wall open for 7 days. They finally closed it, and the real healing process began. During this time Natalie had pneumonia, seizures, irregular heart rhythms, and poor growth.

While in the hospital they learned from a geneticist that Natalie was also born with a rare genetic syndrome called CHARGE. Only 1 in 10,000 babies are born with this condition and many don’t survive. It causes congenital heart disease, vision and hearing loss, growth and developmental delays, swallowing disorder, scoliosis, low muscle tone, and much more.

Natalie spent 3 months in the ICU preparing for her flight back to Oregon. Once home she spent months in and out of the hospital and therapy.

At 14 months old, Natalie had her second open heart surgery to repair a valve. Natalie will require at least one to two more cardiac repairs in her life, and likely one while she’s still a child.

Natalie didn’t walk until she was 3 and a half years old, just a few months before her little sister was born. She was G-tube fed until she was 5 and now enjoys eating ‘real’ food. Her favorites are cake and mac & cheese.

Natalie is considered deaf and blind. She has partial sight in her right eye. She wears a hearing device and glasses, yet she strives to be included and independent.

Natalie is a witty 4th grader. Her sister CeCe is her best friend. She loves her pets and going to horse therapy at Healing Reigns. She also loves her dance class and music, especially Taylor Swift songs. She is spunky and funny, yet sweet and sensitive.

Natalie will be adopted as a Sparrow to Redmond High School. Redmond High students will work hard to raise money for Natalie through sponsored community service.