What did you think when you first learned I was deaf? Did you ever have any fears about my future when you learned I was deaf? Why did you chose cochlear implants for me?
These are just some of the real questions and honest answers a mother, Mia P., and daughter, Zoe S. (10), sat down to ask each other in the “I Want You to Hear” video series.
The “I Want You to Hear” video series explores the emotional journey for parents and children of what it’s like to find out your child is born deaf, navigating the new world of hearing loss, deciding on cochlear implants and how kids who are deaf can succeed just like any other kid with the help of their cochlear implants.
Watch the trailer for Zoe and Mia’s story, read more about their story below and watch Zoe and Mia’s full “I Want You to Hear” series here on YouTube.
Mia shares more on their family’s story:
“Zoe is an exceptional child who has defied all odds. Born with a severe congenital heart defect, Tetralogy of Fallot, Zoe coded while under observation for decreasing oxygen saturation levels. She was small and sick and underwent emergency open-heart surgery at 19 days of age and weighing just 5 pounds. Zoe’s surgery was complicated, and Zoe suffered a seizure with unknown origin. She also had severe intestinal bleeding and was given a triple antibiotic regime for treatment of necrotizing enterocolitis (NEC). After a very long month in the hospital, Zoe was ready to come home with us.
Zoe did not develop at a normal rate, experiencing early stage congestive heart failure, failure to thrive and torticollis. We became involved with child development watch (early intervention services in our state), and Zoe underwent physical therapy, neurological services and GI follow-up. She never responded to her name and never progressed to typical babbling either.
At 7 months of age, we fully anticipated that she had some sort of hearing loss, but she was misdiagnosed as hearing by the state health department audiologist. We were told that Zoe, ‘hears better than most children her age.’ Due to this misdiagnosis, the thought was she was suffering from some post-seizure related cognitive development issue. Zoe continued to make little progress in her speech and development, and we continued to think it was a cognitive issue. At 1 year of age, Zoe was assigned a new speech therapist who strongly recommended another hearing test.
Finally, at 15 months of age, Zoe was correctly identified with severe to profound sensorineural hearing loss, most likely present since birth since she was subsequently diagnosed with a Connexin 26 mutation. Zoe was given hearing aids, and we began learning sign language to provide a language basis for her.
In our state, there is no support for listening and spoken language, so we were unaware as to our language options until Zoe happened to stop a woman we met at a routine visit to the Children’s Hospital of Philadelphia (CHOP) who had the most brilliant red boots on (Zoe has always loved shoes). We asked her what she did, and she told us she was a teacher of the deaf at the Clarke School for the Deaf and Hard of Hearing. She invited us to come and visit and as soon as we spoke with several of the pre-kindergarten students, we knew this was the path we wanted for our daughter.
Zoe received her first cochlear implant at 22 months of age and attended the Clarke School, which was a 90-minute drive from our house (one-way). Nevertheless, Zoe thrived while she was there, and by the time she was 3 years of age, Zoe was on par with her hearing 3-year-old peers with respect to listening and spoken language development.
Zoe was implanted with her second cochlear implant two months shy of her 8th birthday.
Zoe is currently 10 years old and is thriving in the fourth grade. She loves to sing and has participated in musicals and plays at her school and a local children’s theatre. She is also a member of the University of Delaware Children’s Gold Choir. Zoe also loves to read and hopes to grow up to be a famous writer one day!
Zoe is a full participant in her IEP (Individualized Education Program) meetings at school, and this year she worked with her teacher of the deaf to prepare a joint presentation to orient her new teachers to her hearing loss, her cochlear implants and her hearing needs in the classroom. I couldn’t have been more proud!
It has been a long journey filled with doubt and uncertainty, but seeing her in front of her classroom, laughing and discussing her hearing loss has made it all worth it! She is my hero, and I am grateful to be her mother.”
If you’re a parent of a child with hearing loss looking for treatment options to help your child to speak and communicate too, visit IWantYouToHear.com.
