Matthew K. had already faced an uphill road in his early childhood, having gone through multiple surgeries, procedures and doctors’ visits for his congenital melanocytic nevus. After Matthew failed a 2nd grade hearing screening, his school nurse urgently recommended a hearing test. Matthew was diagnosed with single-sided deafness (SSD), and received the Baha® System in hopes of allowing him to lead a fulfilling and active life. Having never had a child with single-sided deafness, Patricia K. was shocked, but ready for Matthew to hear. Patricia K. tells her son’s story below:
“Our road to the hearing-impaired world was fast and furious. October 30, 2015, is a date etched in my brain forever. We were in the pediatrician’s office and my son was across the room sitting in a chair with the doctor administering the hearing screening at the request of his school nurse. Beep, no response, louder beep, no response, third beep, so loud I could hear the beep across the room; he did not even flinch. I distinctly remember the doctor turning around and looking at me. He then moved to Matthew’s left ear, beep, hand up, beep, hand up; little did we know he had single-sided deafness (SSD).
Matthew was born with a congenital melanocytic nevus covering three quarters of his face and scalp. Going to doctors, being in hospitals and having many, many appointments is what we do.
At this point, Matthew had been through about 10 surgeries and procedures. 2015 was the year we were enjoying without any surgeries and even ‘graduating’ from a few doctors.
After the hearing screening, we received our appointment for a full audiological evaluation first thing Monday morning. Monday came and, as we do for all of his big appointments, we held our heads up high, clasped hands and walked into the office together. Matthew went into the sound booth again, and I sat behind him, watching and listening. The beeps kept happening and Matthew gave no response. Matthew would respond with mangled words or just head shrugs with words like baseball and popcorn. As with everything with Matthew’s medical history, I knew on this day that everything had changed. Life had thrown him yet another curve ball.
Finding out his hearing slipped away
Matthew has sensorineural severe-profound hearing loss, also known as single-sided deafness, on his right side. I always say that we (his family, friends, teachers and health staff) found out Nov. 2, 2015, but Matthew knew long before.
You see, Matthew was the kid who at his 504 meeting before kindergarten, I described him as the hyper, but not ADHD hyper, kind of kid. I had to hold on to his hand when crossing the street so he did not dart into oncoming traffic. When I talked about full-day kindergarten, I would say that it took him all year to adjust to the full day. He was exhausted at the end of the day, with the day often ending in tears and getting into jammies as soon as he got home from school.
After he had passed his hearing screenings in kindergarten, 1st grade and with the pediatrician, I asked his 1st grade teacher to see if she could get him to not talk over others so much. I just thought he was (because he is) an overly excitable kid; the one that you want on your team because he loves life and is willing to give everything a chance. He always gives 110 percent, no matter what. We will never know when he actually lost his hearing, but I think it slipped away like a ship in the night, quietly and swiftly.
Matthew’s MRIs showed evidence of neurocutaneous melanocytosis (NCM), a condition where deposits of melanin are on the brain or central nervous system. It appears the melanin deposits are on Matthew’s auditory nerve, which have affected his hearing. I have learned in Matthew’s 9 short years to take what we have and to plan forward, so he is able to get the best out of his life. With the help of his neurologist in New York, his plastic surgeon in Chicago and his ear, nose and throat doctor (ENT) in Connecticut, we were able to decide on a plan that would not only fit Matthew’s needs for his hearing, but also ensure he continued to be the fun-loving kid that he always has been.
Finding the best hearing solution
After a great deal of research by his team and our family, we determined a bone-anchored hearing implant was the best way to address Matthew’s hearing loss. Standing out among others, we felt the Cochlear™ Baha® Attract System was the best fit for us.
Matthew’s facial scars are for the world to see but we wanted him to have an opportunity to have the magnet placed under his skin and afford him with the ability to decide to wear his Baha Sound Processor or not, without an abutment showing. The placement of his Baha System was critical as Matthew wears glasses and has to wear a hat when outdoors.
To my relief and gratitude, the Cochlear representative was present for the placement procedure. Without compromising the benefit of the Baha, his device was placed in a position that allowed Matthew to live his life as he had done before.
Matthew has fully embraced his Baha System. The benefits we have seen in him wearing the Baha have been incredible. Coaches have said to us they noticed that ‘he can hear them across the field,’ and his teachers have reported ‘he is more attentive when others are speaking.’ His teacher of the hearing impaired is always impressed when she comes to school, and Matthew teaches her about the maintenance of his equipment.
Santa even gave Matthew an iPod touch®*, and he now has the ability to mute his Baha 5 Sound Processor and change the volume to work with social settings that are too loud (i.e., the cafeteria). He also loves the streaming capabilities from his iPod touch directly to his sound processor, who wouldn’t?
It is very easy to take for granted all that we hear and all that we do in a day, especially when someone has SSD. It is hard as a full hearing person to conceptualize what amount of energy, hearing and concentration it takes to listen to and to comprehend your world, day-to-day, minute-by-minute. The Baha Attract System with the Baha 5 Sound Processor has provided Matthew with not only high-quality hearing experiences, but also allows him to not carry the weight of the world on his own. Goals accomplished, he continues to be a healthy, happy fun-loving kid who now can hear it all!”