Severe prematurity had left her with a serious bloodstream infection, chronic lung disease and gastroesophageal reflux disease (GERD), and she weighed a mere 1.2 pounds.
Anna spent the next six months in CHOP’s Newborn/Infant Intensive Care Unit (N/IICU), during which time she was diagnosed with a number of other conditions resulting from prematurity: severe asthma, retinopathy (abnormal blood vessel development in the retina of the eye), myopia (nearsightedness), hypotonia (low muscle strength), an abnormality of her brain stem which caused developmental delay and profound hearing loss in both ears.
While in the N/IICU, she needed a ventilator for three months and underwent numerous surgeries.
The odds were stacked against Anna from the start, but CHOP offered hope. Thanks to the efforts of the multidisciplinary neonatal team, she was eventually healthy enough to go home.
Unique program for hearing loss
A few months after discharge, Anna’s family learned about CATIPIHLER (Children’s Hospital Assessment and Treatment Implementation Program for Infants/Toddlers with Hearing Loss-Enhancement Rehabilitation). This unique program helps families identify and access services both inside and outside the Hospital, and offers workshops for families to learn about educating their children with hearing loss.
Anna used hearing aids for a few months, but ongoing testing showed she still struggled with hearing. She was evaluated and approved for a cochlear implant, a surgically implanted electrical device that would help her hear more effectively.
“The implant doesn’t cure hearing loss, but it gives Anna access to sound that she didn’t have before,” says Michael Jackson, MS, an audiologist with CHOP’s Cochlear Implant Program, a specialized program within the Hospital’s Center for Childhood Communication.
“With her cochlear implant, Anna has the opportunity to understand speech and learn to talk. Many children with cochlear implants enjoy music, talk on the phone and even hear well in noisy situations," he added. "Hopefully, Anna will be one of these children.”
Cochlear implant experience
CHOP’s Cochlear Implant Program has performed more than 600 implants since it began in 1990. It is one of the largest pediatric programs in the northeast, performing between 75 and 100 implants a year. The program’s surgeons have experience implanting children with even the most abnormal anatomies, as well as complex patients with multiple disabilities.
“We can’t help some of Anna’s handicaps, but her hearing we can — and we can help it a lot,” says John Germiller, MD, the attending surgeon who performed Anna’s implantation. “I call it a miracle. By reducing this one disability we can make a huge difference in her life.”
The Cochlear Implant Program’s multidisciplinary team of experienced audiologists, otolaryngologists (ear, nose and throat doctors), speech-language pathologists, a social worker and an educational consultant meets with families for multiple educational sessions before cochlear implantation, answers any questions they have, and connects families to each other through a parent network and year-round events.
“The level of support we provide is crucial,” Germiller says. “You can’t just turn the implant on and walk away. These children need significant therapy throughout childhood. We ‘have their backs’ well into grade school and beyond.”
Bright world of language ahead
Anna has had the implant for a little over a year now and has been making great progress in overcoming her language delays. She is in preschool and uses a mix of sign and spoken language. She has a vocabulary of nearly 200 words and can make two- to three-word sentences in both English and Spanish.
Her progress continues to be monitored through CHOP’s Neonatal Follow-up Program, as well as the Cochlear Implant Program every few months.
“With the implant, she can hear,” says her mom. “It’s amazing. I can’t thank CHOP enough. Everyone was wonderful and took great care of her.”
Originally posted: June 2012