I was asked to be a speaker at the Lions mid-winter convention. I was asked by my son's ear doctor and audiologist to speak on the journey we had been on. On a cold Minnesota January morning, I got on stage, despite the fact I wanted to go throw up, heart racing, hands sweating. I told the following story and spoke from my heart to a room people of strangers.
Hosted by: Lions MD5M Hearing Foundation
Yvette will speak about her son's journey to receive the "gift of hearing" from a local Lions Club who was willing to listen to their plea for help. Yvette is the mother of Z, a 17-year-old student in high school who incurred an ear condition at the age of 6 months which required numerous reconstructive ear surgeries and resulted in hearing loss that required a hearing aid. Yvette will talk about how the Lions Loaner Hearing Aid Bank, Lions Children's Hearing & ENT Clinic, the local Lions Club and the Leo's program have literally changed the life of her son and his family. Her son has been involved in the Leo's program since 9th grade and hopes to help carry the banner and lead the 2017 D-Feet Hearing Loss Fundraiser Walk! They are here today to thank the Lions for the financial support, state-of-the-art clinic, and programs that helped Z as he journeyed to receive the "gift of hearing".
Hello, my name is Yvette.
The first thing I would like to say is that I feel honored to be asked to be here to talk about my son's journey.
Z was born in June of 1999 at 38 weeks by a scheduled c-section because he was breech. To the best of my recollection, he did not have a hearing screening in the hospital.
Shortly after Z came home from the hospital a County public nurse came out to the house to check our health. She asked if I would like to participate in their developmental screenings. It was a free service the county offered. I figured sure, why not. They would send out a periodic questionnaire, I would fill it out, and send them back.
I was contacted at 16 months and again at 20 months because he had low scores on motor and communication. He was speaking only a few simple single words and would mostly point when he wanted something.
A referral was made to the school district to do just an observation. It showed he appeared to be meeting developmental milestones. At this point, he was too young for a speech and language referral.
Now he is just about 1 ½ years old and only speaking about 10 words. When he wanted something he had a hard time communicating his needs. He pointed to a lot of what he wanted. When the frustrations got too much, he would have a meltdown to varying degrees. I started looking up and teaching my son sign language one word at a time. He learned the signs very quickly and knew quite a few words. This really lessened frustrations for both of us.
In January 2001 (at 19 months old) after constant ear infections and just wet ears in general. My son had his first set of tubes put in. He worked out of a Fairview office. For this surgery, we only had to go to the day surgery center. The surgery was for chronic ear infections and eustachian tube dysfunction. I remember thinking he was so little and when the time came to turn him over to the surgery team, it was very hard, to say the least. It seemed like forever until he was in recovery. He did really well and things improved for a little bit.
A few months after surgery the school completed another observation. My son had not made the anticipated gains in communication so a full developmental evaluation was recommended. At not even 2 years old, he was eligible for special education services under the category of receptive and expressive language development.
One of the recommendations by the school, and shortly thereafter the doctor, was to have his hearing evaluated because his language was still not progressing.
Just before his second birthday, Z was sent to a sedated auditory brainstem response test. He was sedated because he was so little. The hardest part of that was watching your normally very active toddler lie perfectly still for hours. It was very unsettling. Luckily, the tests came back “normal”.
The school services for speech and language were continued at pre-school and he started to make some strides. But at the two-year well-child visit it was noted he was still not combining two words.
In July 2002, at 3 years old, he had another ear tube surgery by the same doctor. He was still struggling with ear infections and hearing loss. At this stage, the doctor said that he felt there was genuine mild hearing loss.
At an early childhood audiology evaluation, to no surprise, he did not pass. I received a referral for another hearing evaluation. The tubes that were put in had fallen out and his ears were not draining properly, he had more infections and his hearing decreased. There was another surgery in February of 2003. He was almost four.
After this surgery, he had some significant improvements in speech. His hearing evaluations continued to come in low and he still struggled with ear infections for the next couple of years.
In November of 2006, at age 7, Dr. F completed his fourth surgery for tubes. He also noted inflammation of his adenoids so he took those out too. This surgery took place at Children’s Hospital. The hospital had pictures to show children what was going to happen. An adult could accompany the child to the operating room and stay while they go to sleep. My son had his little bear and waved at me. I got emotional. A nurse walked me back to the waiting room and I hoped this was his last surgery.
Surgery went well and he didn’t make any more noise at night. He was still having ear infections, his hearing tests continued to decrease, he was still receiving speech services, and struggling in school. In the meantime, other family and medical issues have come up and he’s dealing with that too.
We started seeing Dr. P. and my son continued to have ear infections and low audio grams. In November of 2012, Dr. P wrote a note for the school to have priority seating and was the first to mention we should think about a hearing aid.
At one of the appointments, Dr. P said he was moving out of state. I specifically asked who to go to now. He said “If this were my child I would take him to Dr. R” and gave me the contact information.
June 2013 was our first appointment with Dr. R.
Even at the first appointment, I remember leaving feeling like I understood what my son was struggling with. I felt like the audiologists took way more time. It felt like he was in the hearing testing booth much longer and that different types of tests were done. The audiologists would patiently answer questions. They actually explained the different types of tests and what they mean. Not just a blanket we are checking his hearing.
Dr. R said the left tube was still in place. The right tube was out and the hole that was in the right was significant. He recommended another surgery to take out the left tube and patch that hole. He would also patch the hole on the right side. He was very calm and explained exactly what was going to happen. The surgery would basically nearly remove this ear and use his own skin tissue as the patch. Recovery would be a little longer this time. The surgery took place in October of 2013, Z was 14, and this was his fifth ear surgery.
A short time after surgery there was a significant accident and his ear was nearly ripped off. He was brought to urgent care and that doctor called the on-call doctor at Lions. The on-call doctor told the urgent care doctor how to handle it. The next morning the clinic got us right in and Dr. R said he would not recommend a restitch and to just let it heal. I was sent home with gauze patches to pack behind his ear to hold it in place until it reattached on its own.
When the hole was closed his hearing was moderate. With the hole open it was a bilateral conductive hearing loss. They determined the nerves were working properly but the sound was not getting in like it should.
In the right ear, he has mild sloping to moderately severe hearing loss.
In the left ear, he has normal sloping to mild high-frequency hearing loss.
Over time the hole in his right ear started to come back and his hearing tests decreased again. Dr. R was going to another clinic and gave me a couple of doctor’s names.
In December 2013, we saw Dr. Ro for the first time. She explained the audio tests and what could happen depending on how the ear took to the patch. We just had to watch and wait and we had to keep his ear dry.
A couple of years later, in January 2015, at a follow-up with the audiologist and Dr. Ro. The audiogram showed a continued decrease and the hole was creeping up in size. A referral for a hearing aid was made. We met with J.S. to discuss options. We found out the cost was around $1800 and was not covered by insurance. So things went on hold.
We went back for a follow-up months later. It was discovered the patch Dr. R put on had a hole in it. Another surgery was recommended to patch the hole again to bring his hearing back up.
So October 2015 we went back to the hospital for his last to-date surgery. Being that my son is now 16 he has to wait what is seemingly forever for his turn.
The nurses and literally everyone we dealt with were so accommodating and understanding. They tried to keep him busy because he kept saying he was so hungry. They would come in and give updates. Once he went to surgery they kept us up on the status. The surgery took much much longer than anticipated. I kept watching the screen, getting very emotional and tried hard to keep it together. It was getting later and later. The waiting room was emptying out. I couldn’t sit still, was pacing all over.
Dr. Ro finally came out in full scrubs. She said everything went great. He was going so well that she cleaned up some scar tissue and took a bit longer to make sure everything would hold. She said he was in recovery and doing great. They brought us back right away.
We went back for follow-ups and the same thing started happening. His hearing tests started to decrease. His body made a hole in the same place, the same size.
Dr. Ro said she had used a different patching material. At this point, it was time to discuss a hearing aid again. She discussed the benefits and how much it would help in school. Everything possible medically speaking has been tried. For whatever reason his body wants a hole in that ear.
J.S. was usually the audiologist we met with. J recommended a hearing aid referral. I had said that the hearing aid had been discussed previously and insurance paid nothing.
J said there is an option for a hearing aid loaner bank for families. She explained how it worked and we agreed to give it a try. I couldn’t even believe it was real that this existed. We were so happy.
When the loaner came in, J got it all setup. The first time in the car he kept saying, What’s that, Do you hear that, Make that stop, Turn down the radio, Is your window up,…
He was experiencing sounds he had not heard before. The school was a challenge at first. J was beyond what I would expect. She was so accommodating. She would take emails and respond quickly. She was super patient with all my questions and really encouraged my son to wear his hearing aid every day.
She made time in the morning for us to stop in for adjustments. She would send out supplies and email instruction videos. One time we had to come back and he was kind of hesitating, she said she would bring him breakfast. Our appointment was weeks later and she remembered. She had breakfast for him!!
The time on our loaner was running out and we were not sure what to do. I was told that sometimes the Lions are willing to help but we need to reach out. I sat on this information deciding what to do. I am not one that is comfortable asking for help.
I finally decided to reach out to our local Lions because that is where he went to school, and where we spend all our time. I called and spoke to someone and received a call back from N.K.
I explained our story and why I was calling them. I also told him that my main reason for calling them was that my son was a Leo at the high school. After some back-and-forth phone calls, he called and said we were approved. I felt a rush of emotion and was beyond grateful. I hung up the phone and started crying.
N worked with J and now my son is wearing his forever hearing aid. He is adjusting to the new one. He has said all along it helps him. This is his best year in school yet.
He has been on task, his grades are better and more consistent than years previous, homework gets done and turned in, and his teachers have commented about how much better he’s doing. And the speech services he’s been receiving his whole school career have been changed to in-direct. He’s not pulled out of class anymore.
Over the years, my son has had to deal with a lot of other medical and neurological types of things. Now this is one less thing he has to worry about
We have continued with the follow-up visits with the audiologist and Dr. Ro. His ear has stayed clean and dry. His life up to this point has been constant fluid in his ears and ear infections. He underwent a total of six ear surgeries. Dr. Ro said maybe once he stops growing and is an adult they can try the surgery again.
We cannot say thank you enough for all you do.
The time and effort that each one of you has put in … on your personal time .. and taken time away from your family … has directly and positively impacted my son and the quality of his life.
There is no way I can express my thanks enough.
When I finished this speech, there were people in tears. I walked off that stage feeling like I had just accomplished something huge. I didn't feel sick anymore, I felt excited I was able to share this journey with the people who were directly involved in helping my son.
If your child is struggling with hearing loss, there are ways to help them. Advances in hearing aids make it so they are small and come in many colors so they blend in.