Carver's Story
Determining the Benefits and Challenges of Cochlear Implants for Children with Combined Hearing and Vision Loss
Children Who are Deaf-Blind with Cochlear Implants
Carver was born March 29, 2007, 16.3 weeks early due to PROM (premature rupture of membranes). He weighed 1 lb. 7 oz. His twin sister, Kinnick weighed 1 lb. 3 oz. The fight to save their lives was on.
Carver spent 7 months in the NICU. His twin sister spent 8 months in the NICU. The time that Carver was in a NICU included 2 months in a NICU in Royal Oak, Michigan (16 hours from our home in Kansas) where he was transferred temporarily in order to receive treatment from an eye specialist.
Carver was on life support for 5 months due to his poor lungs. He required heart surgery (PDA ligation) within the first few weeks of life. While this procedure saved his life, it caused a grade 3 and a grade 4 IVH (intraventricular brain hemorrhage). This blocked the flow of cerebral fluid resulting in Cerebral Palsy. Carver is diagnosed with Spastic Quadriplegia CP, making movements difficult for him. His extremely premature birth also resulted in a condition called ROP (Retinopathy of Prematurity). This condition caused the retinas to detach resulting in blindness. During a surgery to save Carver’s vision and stop the ROP, the optic nerve in one of his eyes was damaged. This left Carver completely blind in one eye. His other eye has some light perception and shadows.
Prior to being released from the NICU, Carver’s hearing was tested. He was basically flat-line on his ABR. He couldn’t even hear at 120db (the sound of a jet plane). All along, we kept saying, “we can do this.” The deaf diagnosis really sent us into panic mode. How are we going to teach a deaf/blind child? Well, it hasn’t been easy. However, Carver fought hard to be here, so we’re going to fight to give him every opportunity to succeed and to be the most he can be.
Carver received his first cochlear implant (an electronic device that allows you to hear) when he was 20 months old. He had to wait until he weighed 20 lbs. to have the surgery. He received his second cochlear implant 11 months later. The cochlear implants have given Carver the gift of hearing. This made a huge difference. However, this requires a LOT of speech and hearing therapy. Trying to find qualified therapists that have worked with a deaf/blind child with other disabilities has been a huge challenge. It’s easy to find someone who has worked with the deaf or has worked with the blind, but the deaf/blind is a different story. Fortunately, we were hooked up with a grant project that is conducting research to determine the benefits and challenges of cochlear implants and deaf/blind children in order to identify effective strategies following cochlear implantation that enhance communication and language development. The project has provided free therapy and interventions to help Carver in his struggle to communicate effectively. Not only do we get free therapy and intervention material, the therapist assigned to Carver has been involved with kids just like Carver for over 30 years. We hit a Gold Mine!
Finding good therapists is just one of our challenges. There is also the expense of caring for a special needs child. How on earth is someone supposed to pay for the expensive equipment, therapy, and insurance? Many of the programs are “needs based,” meaning you qualify if your family’s income is under a certain dollar amount. The dollar amount is extremely low. Somehow, you suddenly find out how “rich” you are. The average-income family can’t possibly afford to pay out of pocket for thousands of dollars in equipment and insurance. Finding resources to help fund these things isn’t always easy. It seems like all of the information isn’t in one place. You get lucky when you run into someone who shares a resource with you that helps you out. Even when you find a resource, they’re not always that easy to interpret, so they get overlooked. However, even with all of the therapy and equipment in the world, finding an effective way to communicate remains a mystery. We continue to explore any and all suggestions for communication— gestures, touch cues, switches, signs, routines, and anything else that is suggested. Hopefully, one day we’ll find the “thing” that clicks for Carver. He seems to enjoy the switches and loves to play finger and hand games. His receptive language is beginning to develop over time with consistent routines. His feeding improved significantly with the addition of cochlear implants. In addition, his participation in games has also improved with the ability to hear.
Outside of the challenges of finding qualified therapists and funding to help with insurance, therapy, and equipment needs, we spend a lot of time just having fun with Carver. He is the happiest little guy. He is so easy to please and is so patient. We keep a blog of Carver and his twin sister’s journey as 23.4-weekers. Please visit us at www.kinnickandcarver.blogspot.com.
Funded by the U.S. Department of Education, Office of Special Education-Technology and Media Services for Individuals with Disabilities (CFDA 84.327A). Grant H327A080045; Project Officer, Maryann McDermott. Opinions express within are those of the project/author and do not necessarily represent the position of the U.S. Department of Education.
