One Family’s Journey
Following the Path
By Becca Vach, Nebraska H&V
I met my husband in high school. Like most high school sweethearts, we had our whole lives planned out and thought that if we followed our path that everything would be just as we dreamed. Everything seemed to be going right until, well, it wasn’t. Our families often teased us because we over-planned or over-thought every life decision.
With our son nothing went as we thought it would. When I found out I was pregnant with our son, Brayton, we had just moved into a home that needed a complete remodel, we had just lost our daycare provider, our basement flooded, and everything seemed to be falling apart. Little did we know that these seemingly insurmountable issues were nothing compared to what lay ahead.
We welcomed our son Brayton in November of 2017 and our family and path felt complete. We were ecstatic until we were informed that Brayton had failed his hearing screening twice. Then the worries set in. They recommended waiting a day and re-screening to ensure accuracy. The next day, the nurse informed us that Brayton had passed his screening and that everything was okay. We were again overjoyed and had no idea those original results would be the start of our whirlwind adventure.
We spent the next three days in newborn bliss until we noticed that Brayton had developed a rash. We tried every cream possible to clear it up and after a week decided it was time to see our family doctor. As we were dealing with the “rash”, I came down with mastitis (a breast infection) and after two rounds of antibiotics, I had to have emergency surgery to remove an abscess. The abscess ended up being an infection known as MRSA, an antibiotic resistant staph infection. Our doctor recommended testing Brayton as a precaution and sure enough Brayton’s swabs grew MRSA, also. Brayton and I spent the next two weeks in the hospital getting Vancomycin together. A month later we were back in the hospital when Brayton had his second bout of MRSA and additional rounds of Vancomycin.
After the hospitalizations things seemed to being going well until Brayton was five months old and got his first ear infection. By 11 months, Urgent Care referred us to an ENT to have Brayton assessed for tubes. The ENT agreed that Brayton needed tubes and scheduled his surgery. Unfortunately, Brayton was unable to have the surgery because he got RSV. After re-scheduling several times due to chronic respiratory illnesses, we decided we would call in when he had met the requirements of no respiratory issues for six weeks.
As Brayton’s second birthday loomed, we noticed that Brayton never responded when we were talking, but that if we raised our voices, it almost scared him. At Brayton’s two-year check-up, I shared our concerns about his speech. Our doctor recommended that we consult with a speech therapist. The therapist found that Brayton was in the one percentile for receptive and expressive speech and language, but assured me that she could get him back on track. I was heartbroken. I kept thinking that I had failed him. Had I not read to Brayton enough, or worked with him sufficiently?
After two months in speech with no progress, a substitute therapist questioned if Brayton’s hearing had ever been tested. We explained that he had only been tested at birth. The therapist referred us back to the ENT to discuss re-scheduling for tubes and to have a hearing test done. In January of 2020, an audiologist completed Brayton’s hearing testing and informed me that Brayton had bilateral hearing loss but that they wanted to wait to formally diagnosis until after Brayton had tubes placed. Finally, that March, Brayton had tubes placed. The surgery went well but the ENT wanted to ensure that we got a follow up hearing test after he recovered. Then COVID hit, and the waiting game to get back into the ENT began. Following the surgery, we saw HUGE progress in Brayton’s speech, so in our minds, we thought the surgery had fixed his hearing! Then, on May 15th, we had our follow up hearing test and were told that Brayton failed in the same spots as before. The audiologist recommended we wait another six months and re-test, but our ENT decided waiting was detrimental given his delays. We were glad for that.
Due to COVID, I had to go to that appointment alone and I sat in shock as they delivered the news. I am typically an inquisitive person, but I couldn’t formulate any questions. I called my husband on the way home and told him of the news I had just learned. He asked me a million questions…all the questions I could not formulate back at the clinic but so badly wanted to know. All I could say was “What if he can’t join the military”, “What if he won’t be able to play sports?” “What if he gets made fun of at school? What will his life be like?” When we got home that night, I couldn’t even talk about it. I was scared. I felt like I had caused this; I blamed myself for not recognizing sooner or advocating strongly enough when I knew something wasn’t right.
A month later Brayton’s hearing aids came in and as we put them in, and I talked to Brayton, his eyes got huge and he just looked at me with an expression like: what is all this noise? My husband, who, up until this point was in disbelief, looked at me in shock and we both finally realized this was our son’s life from now until forever.
In August at a birthday party for my niece, a special education teacher offered to refer us for services through the Education Services Unit in Nebraska. We didn’t realize he didn’t have to be in school to receive support. That referral allowed us to meet the MOST incredible group of individuals who have completely changed our perspective and purpose. They assisted us in finding a pediatric audiologist, in obtaining pediatric hearing aids, in providing speech, in sharing books, and in referring us to Hands & Voices. One particular book, “Hearing with my Heart” was a game-changer for me in coping and feeling empowered to advocate for my son.
We may never know if Brayton was born with hearing loss, if it was caused by the ototoxic medications he received at birth, or if it is genetics. Regardless, because of this organization, and the people we have met along the way, we now know that no matter what, our son is going to be okay and that he can achieve anything he wants to achieve on the path he is showing us. ~
Editor’s note: Becca Vach lives in Mitchell, Nebraska with her husband and two children, Bristol, (7) Brayton (4).
H&V Communicator – Spring 2022