There was something wrong with Joshua Copens hearing. No matter how many times doctors told Iara Peng, Joshuas mother, that her baby with Down syndrome had normal hearing, she knew they were wrong.
Joshua Copen, 5, born with Down syndrome and hearing loss, has a significantly improved quality of life, thanks to cochlear implants. (Photo: Business Wire)
I was saying things to him and he wouldnt respond, said the San Carlos, Calif., mom. Noises that should have made him react werent. Sometimes children with Down syndrome respond differently to sounds. But Down syndrome or not, this wasnt right.
That was in 2009. Now, Joshua can hear. And talk. And take part in birthday parties. He can participate in our family, said Peng. He can participate in school. He can go to the doctor or the dentist and understand whats happening.
Peng said she owes Joshuas new life to Kay Chang, MD, a pediatric otolaryngologist and otologic surgeon at Lucile Packard Childrens Hospital Stanford and Stanford Childrens Health, who passionately advocated cochlear implants for Joshua. For many doctors, cochlear implants would have been an unconventional approach for a child with Down syndrome.
Traditionally, developmentally delayed patients havent been seen as ideal candidates for cochlear implants, said Chang, associate professor of otolaryngology – Head and Neck Surgery at the Stanford University School of Medicine. The electrical stimuli delivered by the implants have no resemblance to regular hearing. The brain has to adapt itself to learn the electrical patterns. Someone who is developmentally delayed isnt going to progress as fast as a child who is developing normally. However, just because its a lot tougher to rehabilitate a child with developmental delay doesnt mean they wont benefit from it.
And Chang didnt believe that hearing aids were enough to help Joshua hear or learn speech and thought the cochlear implants were the childs best shot for interacting with the world. And Peng, who looked at all her sons options, including sign language, agreed.
Like my husband and I, Dr. Chang believed that Joshua can be anything and that cochlear implants were critical to giving him the opportunities he deserves.
The journey began when Joshua was 16 months old. An auditory brainstem response test an examination of the nervous system that controls hearing revealed that he was profoundly deaf. Unfortunately, hearing loss in general is not unusual for children with Down syndrome, who have a higher incidence than other groups. When Peng conferred with physicians across the country about what to do, they told her that she had the premiere expert right in her own backyard at Stanford Chang.
Although Chang and Peng were convinced that the implants were the best option for significantly improving Joshuas quality of life, they had to prove it to insurance companies.
Its a huge process to prove that a hearing aid wont work instead, Peng said. But Chang believed that with the right auditory rehabilitation and speech therapy program, Joshua could learn to take full advantage of the cochlear implants, and thats why Peng said she appreciated the physicians dedication to her son.
Here was this world-class surgeon telling me he believed my sons quality of life mattered, she said, adding that that hadnt always been the case.
You dont get the same reception treating a Down syndrome child that you would get with a typical child, said Peng, whose two other children are developmentally normal. What you get is a lot of pity and low expectations. Doctors will say, Youre doing too much for him. Its like theyre giving up. Never once did I get the feeling that Dr. Chang was giving up on him.
Chang performed the implant surgery in 2011, just before Joshua turned 2. There was a caveat to ensuring the implants success. Joshua would have to attend a special school to learn how to train his brain to hear and speak. The familys insurance providers came through, convinced by Chang that the implants were Joshuas best course of treatment. Peng and her husband, Brent Copen, thereafter enrolled Joshua into the Weingarten Childrens Center, a non-profit school in Redwood City that teaches kids with hearing loss language skills. Joshua did so well after the first cochlear implant that six months later, he had the other ear implanted as well.
Joshuas life began to drastically change to the point where now, at the age of five, hes in the 50th percentile for learning comprehension of all children his age. In the meantime, John Oghalai, MD, is completing a study funded by the NIH in which he is trying to measure the benefits of cochlear implants in developmentally delayed patients like Joshua. Oghalai is director of the Childrens Hearing Center at Lucile Packard Childrens Hospital Stanford and associate professor of otolaryngology at the School of Medicine.
In a similar 2012 study, Oghalai found that the use of cochlear implants in deaf children with developmental delay can help them from falling further behind their peers and shouldnt be so easily dismissed. And the earlier the child gets the implants 12 months is the minimum age allowed by the FDA the better.
Chang said the studies are significant, but he didnt need them to know that cochlear implants were the best choice for Joshua. There is no question in my mind that without them Joshua wouldnt have learned speech, Chang said. Look at what a great success story he is. Hes the best proof possible that we should never, ever write these kids off.
About Stanford Childrens Health and Lucile Packard Childrens Hospital Stanford
Stanford Childrens Health, with Lucile Packard Childrens Hospital Stanford at its core, is an internationally recognized leader in world-class, nurturing care and extraordinary outcomes in every pediatric and obstetric specialty from the routine to rare, for every child and pregnant woman. Together with our Stanford Medicine physicians, nurses, and staff, we deliver this innovative care and research through partnerships, collaborations, outreach, specialty clinics and primary care practices at more than 100 locations in the U.S. western region. As a non-profit, we are committed to supporting our community from caring for uninsured or underinsured kids, homeless teens and pregnant moms, to helping re-establish school nurse positions in local schools. Learn more about our full range of preeminent programs and network of care at stanfordchildrens.org, and on our Healthier, Happy Lives blog. Join us on Facebook, Twitter, LinkedIn and YouTube.
Lucile Packard Childrens Hospital Stanford is the heart of Stanford Childrens Health, and is one of the nations top hospitals for the care of children and expectant mothers. For a decade, we have received the highest specialty rankings of any Northern California childrens hospital, according to U.S. News & World Reports 2014-15 Best Childrens Hospitals survey, and are the only hospital in Northern California to receive the national 2013 Leapfrog Group Top Childrens Hospital award for quality and patient care safety. Discover more at stanfordchildrens.org.