Advocating for yourself and others

I will warn you now…this one is a little longer than my previous posts. If you don’t have the time to read it, I will never know.

Back in 2012, March 8th to be exact, I returned to my wife’s postpartum room at the Medical College of Wisconsin. 24-hours earlier my 2nd daughter Siena was born. She delivered stoically without a cry, but she was full of life. And today she would fail her initial hearing test.

The nurses claimed it was most likely due to a mechanical error. We were not too worried after hearing those words. The next day they reran the test, and she failed again. And again we were told and reassured that it was most likely just an error, as 6 infants had failed the same test the past week. Finally, the screening technician explained that it could be the machine or could also be due to amniotic fluid in her ears.

She was then on her way to radiology for a kidney ultrasound, as often times hearing loss is related to various syndromes—single diseases often seen in clusters with others. Nothing remarkable was seen on the scan; still no explanation at this point. I was beginning to become somewhat stressed.

As we prepared ourselves for discharge from the hospital, we were told to follow-up for a repeat test in 2-weeks. Again, it was a little stressful worrying about what could be wrong with our new baby. Of course, I had to miss the appointment due to being at the bottom of the medical school food chain.

I received the hysterical and sobbing voicemail from my wife—Siena had failed again.

So then another appointment was to be made, but not until 6-months later. Hell no! That was not going to work for me. Not now. Not later. My first thought: what is happening to all those people who have no VOICE? Those families in our position who just don’t know how to ask the right questions? My purpose was staring me directly in the face, and Siena’s PROCESS was something I needed to fight for. If I didn’t, who would?

I was angry and I decided to call a mentor at the medical college. He then made a phone call to his Otolaryngologist friend—an Ear, Nose and Throat doctor. He requested that we bring Siena in for an evaluation later that day.

When we arrived, I provided him with our insurance paperwork to pay for the visit. He quickly snatched the forms out of my hand, ripped them apart, and threw them away. He did not want us to pay for the services, but rather that I “pay it forward” and do the same for someone else throughout the days that would follow.

He could not find anything wrong “physically” with Siena’s ears. I was not really sure at the time what he was actually looking for, but there were no missing ear drums, the ear canals were patent, and there was no fluid. Everything was normal. He told us not to fret, and that we would not be waiting 6-months for another evaluation.

We would see an audiologist about 10-days later. The ENT doctor had been a man of his word. He was intentional in his practice. His PROCESS was laid out in front of me.

Those were a long 10-days. We became very impatient. With a 2-year old daughter at home, our attention span was limited. The day finally came for the test. This time was a little different with a bunch of wires and equipment in a small, dark room. It took much longer than the 20-minute tests done previously. It felt like an eternity—3 long hours. My eyes were unwavering. I was watching the audiologist like a hawk, trying to calculate her reaction to every waveform coming across the screen. I knew something was wrong, but how bad could it be?

My wife and I had no experience with hearing loss. No family members to relate to. But we were never in denial. We believed the results, one after another. As the audiologist broke the news to us, our hearts were crushed, our spirits destroyed. What the f#!*% were we going to do? The lady kept talking and we kept sobbing. Emotions were running at an all-time high.

Siena had hearing loss in both ears that would require hearing aids, and possibly further intervention, and we were told that she perhaps would never talk coherently, and lose all of her remaining hearing by the age of 7. I felt like I had been run over by a truck. This was my worst nightmare. The most troubling thing for me is that there was no defined reason (at least at that point in time, but we would learn a lot more later) as to why she did not have normal hearing.

She would be fitted that same day for hearing aids, and they would arrive about 2-weeks later. We got home and I was a mess. I walked the neighborhood alone, and then stopped at my friend Jared’s apartment, sobbing while I knocked. I was ashamed. Two grown men displaying little testosterone.

Siena went on to get those hearing aids. We needed to use athletic tape to keep them in place because of her small head. We would press forward. The PROCESS was in motion. Siena’s life was now evolving, and she would require a little help for something most of us take for granted. Now it was time for acceptance. We could not change what had occurred during embryological development in the womb. This was our baby and she was our gift. A mere coincidence that the translation of her middle name to English meant “Faith,” because it was what would ultimately pull us through.

Advocacy was now a part of me and I would forever have my life and eventual medical practice changed. The message: DON’T WAIT. Action saves the day. If you don’t take action when needed, then odds are nobody else will either. Be an advocate for you, your family, and even for that person you may not know. Early intervention, whether for a baby or for an adult, can make a huge difference.

Is there something you should be advocating for today? If so, get to it.

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