Taliah

At the age of 2 ½, Taliah was diagnosed with CHARGE syndrome, a genetic disorder that occurs in 1 of 10,000 live births and affects virtually every system in the body.

When Tammy and Tom Wendoll were expecting their first child, they had no idea she would need specialized medical care for years to come.

Their daughter, Taliah, was born with a bilateral cleft lip and palate and a hiatal hernia.  She needed immediate surgery to repair the hernia, along with a feeding tube for nourishment. Taliah spent her first two months of life in the neonatal intensive care unit. She struggled with constant pneumonia, an inability to swallow, hearing loss, respiratory issues and balance/growth motor delays, all of which led to a preliminary diagnosis of “multiple congenital birth defects.”

Tammy and Tom didn’t know what this meant or what Taliah’s life would be like, but they would not get an immediate answer, as Taliah was not stable enough to have additional tests. Their daughter would have these tests at the age of 2 ½, which revealed the cause of her medical problems.

Taliah was diagnosed with CHARGE syndrome, a genetic disorder that occurs in 1 of 10,000 live births and affects virtually every system in the body. The diagnosis explained all of Taliah’s issues: Her swallowing difficulties with aspiration could be attributed to cranial nerve abnormalities; her lack of balance, coordination and strength resulted from absent semicircular canals and growth development delays; and her hearing and vision loss were due to an absent cochlear nerve and coloboma of the retina.

In 2008, when Taliah was 3 years old, the family moved to San Diego. Their biggest concern was moving to a new hospital and leaving their specialists behind. They wondered if their new hospital, Rady Children’s Hospital-San Diego, would be able to handle Taliah’s needs.

Tammy and Tom were surprised to learn of the Special Needs Clinic at Rady Children’s. And at their first visit, they learned that their doctor was not only  familiar with CHARGE syndrome, but managed the care of several other children with the disorder. Based on his evaluation of Taliah, the doctor made referrals for the other specialists she would need.

One of these specialists was a pulmonologist, as Taliah continued to battle with severe bouts of pneumonia. She was diagnosed with silent aspiration, whereby foods and liquids that should go into the stomach go into the lungs instead. And instead of coughing to clear the food or fluid out the lungs, there is no cough at all (the aspiration is “silent.”) The doctor recommended a non-invasive treatment for Taliah, a vest that she wears for 20 minutes twice a day. It vibrates on her chest, which breaks up the mucus in her lungs. Since she began wearing the vest two years ago, Taliah has not had another case of pneumonia since.

Rady Children’s  is a home away from home for Taliah and her family, providing both the care and support they all need. With the help of Rady Children’s, Taliah learned to walk at age 5, a milestone that some children with CHARGE syndrome never reach. Now age 7 and in a mainstream second-grade classroom, she is thriving and takes dance, gymnastics and soccer.  She also joined a Brownie troop.

Tammy and Tom know that Rady Children’s will also be there for Taliah’s next milestone – and to support the entire family.