When Ethan was born, I noticed quickly the skin tags on his right cheek. At the time they were only a minor concern, but as we found out, they were a sign of his hearing loss. Ethan's ear microtia is noticeable however it’s these skin tag, hanging off of his right cheek that are more noticeable.
The ear develops close the mouth in utero and develops traveling back across the head. In Ethan’s case, the ear left piece of cartilage behind during this process leaving behind these skin tags on Ethan’s cheek.
This week the skin tags were removed by a plastic surgeon. The skin tags are harmless and mostly a cosmetic issue. We were concerned that the more mobile he would get, that he would accidentally tug at them or have them come off in a more painful circumstance. So we opted to get them surgically removed.
It wasn’t a major procedure, it took less than twenty minutes. Some local anethetic was injected, a snip with surgical scissors got them off and two stitches were quickly done. After two days, there’s barely a mark. That’s one of the wonders of babies, their skin often heals at amazing speeds.
The first sign, the first hint of Ethan’s condition is now gone. He will not remember having these skin tags, or having them removed. There’s a possibility that he may remember very little of his own struggles and ours.
At sixth months old, Ethan is going to be fitted with a bone conduction hearing aid. The best case scenario is that at age five after getting an MRI, he is determined to be a good candidate for a ear canal drilling, which would potentially correct his hearing loss, so that he would have “normal” hearing. The MRI could find that this procedure would not work for Ethan. Also the surgery ear canal drilling (I know, it’s like the worst name possible for a surgery on a little kid) has its risks. So right now nothing is guaranteed.
Let’s say we have the best of all situations. This means that Ethan will have some memory of wearing a hearing aid, and maybe the procedure, but his new normal will be a life when he isn’t actively reminded that he had hearing loss. But I’m never going to forget this about Ethan. We’ve had our challenges with understanding and working through this disability, and it’s only going to get worse. While hearing aids continue to advancing at an amazing pace, trying to keep a hearing aid on a baby, who will become a toddler, and then a pre-school age child is not going to be a piece of cake.
Ahead of us is issues with batteries to deal with, malfunctioning technology, battles with insurance, educating family, friends and schools about Ethan’s needs, and most of all helping Ethan understand that his condition is not a hindrance on his journey to get where he wants to go in life, it’s simply a detour.
Diana and I have both joined a Facebook support group of parents whose children have unilateral hearing loss like Ethan. It’s filled with wonderful pictures and hopeful stories. The challenges of insurance, the devices, and other people, I know I can handle, but it’s the part of helping Ethan grow to understand, accept and love this part of himself that I feel is most important and will the be most challenging. Getting an insurance company on board doesn’t take subtlety, it takes persistence. Helping Ethan get “it” about himself will take, heart, love, and support.
Diana and I are looking into being part of social gatherings of families with children like Ethan so we can get some support, and Ethan can be around kids who he can see have hearing aids just like he will. I’ve already picked out some headbands so that Ethan will not feel like he’s the only one in the family who wears one. Maybe, just maybe, he will be more excited to where his hearing aid (which will be supported by a head band), if he can be just like daddy. Oh, and we’ve already ordered him a wonderful Christmas present. It’s a little crocheted stuffed rabbit. The rabbit’s right ear is a little smaller just like Ethan’s and it has sewn in a little headband and hearing aid.
I’m still not sure how talking about his condition will come out. I’ve considered telling more people close to me to practice, and work through this, but right now, part of me still doesn’t feel ready. Family holiday gatherings will bring this challenge to the fore. At least I know that with many of these people, it won’t matter if I cry. Each time I talk about it, it will get easier to discuss. It’s worth leaning into this challenge, because it will help me work through it and process this for Ethan. I know that everyone who has Ethan in their lives will be more better and more empathetic people through understanding, and learning about Ethan’s hearing loss.
In this way, Ethan right now, can change the lives of people that he touches. His family and our friends will listen a little bit more carefully when they hear stories about hearing loss, the will stop to read articles about the deaf community they would have previously passed over, they will slow down a little bit more when they see a road sign warning that there is a deaf child in a neighborhood, and they will pay a little bit more attention when they someone is using sing language. In this way, Ethan will help strengthen their muscle of empathy and compassion, and bring the hearing loss community into their own.
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