Tuesday, July 22, 2014

Who doesn't love a little ear? {Microtia Repair}

Right before surgery
I'll be honest--I kind of like his little ear. But...Christian has come to me a number of times asking if I can get him a new ear and a new hand.  He feels like is being teased by his peers. As a Mama Bear I wanted to head over to school and deal with this.  But the fact is that he will have to encounter with this for the rest of his life, and he will have to find strategies and support so that he is as sure of himself as possible.

We got him fitted for a hand and will pick up that baby next month. Easy peasy.

Getting casted for his.hand
But the ear?  Well, that is a bit more tricky.

There are very few surgeons in the United States that are considered experts in this field--under 10.  There are none that are local.  One local doctor said that he practiced the procedure in South America years ago, but he would not recommend that he perform the procedure.  I most certainly appreciate his honesty as one must be an artist at some level to create a new ear.  His friend in New York can do the rib graft procedure, but he does not take insurance and we will have to pay out of pocket.  Our insurance company MAY consider reimbursing us a portion of what they THINK the procedure should cost.  There are way too many variables with that scenario and I have no interest in dealing with our insurance company when it comes to reimbursement for such a large amount of money.  We consulted with another professional regarding a prosthetic ear, but after the second visit it was clear that he didn't know much more than I do about it.

I am no expert, but based on my research we have 4 options.

Microtia Repair Options Include:

Rib Graft:  A child should be at least 6 to consider this procedure. This will require at least 3 surgical procedures, the first being an incision between rib 6 and 9 to obtain some rib cartilage.  The rib cartilage will be shaped and suctioned to the skull.  The next 2 surgeries include lobule transposition and elevation.  If Christian was a candidate (he is not) a canalplasty would be followed for the atresia repair.

Medpor:  A Medpor can be done for a child as young as 3. With this procedure, a canalplasty can be completed prior to or after the Medpor procedure.  It is basically an implant that is placed on top of the scalp covered by living tissue. It does not require as many procedures and can be made to look almost exactly like the other ear.

Prosthetic:  A prosthetic ear typically involves two procedures in order to implant magnets that will hold the ear in place.  This is typically done for children ages 5 and up, and can be completed from start to finish in under a year.  The type of prosthetic ear that we consulted with a doctor about for Christian involved purchasing a new prosthetic every 2 years for the rest of his life.

Nothing.  A little ear is beautiful, and nothing actually has to be done.

None of these options improve hearing since we are just looking at a microtia repair.  We have yet to venture into the world of hearing aids as we are still trying to figure out if we should or should not. 

For insurance purposes, it is typically considered reconstruction rather than cosmetic, but there are only a small handful of professionals throughout the U.S. that are considered experts. Some offices don't either bother with insurance companies, and it is up to the family to pay out of pocket completely and hopefully be reimbursed a percentage of what the insurance company think the surgery should cost.  Our insurance company wasn't helpful.  The representatives that we spoke to said to look for specialists on their website, but the website does not give an area of specialty that is so specific. All we had was a list of ENTs to consider but none that listed that they actually had experience with such a procedure. 

With so many variables it can be difficult to figure out the right path. It actually took us years of discussion, medical consults, phone conferences, and connecting with our insurance company to figure out what path would work best for us.  For Christian.  

A fabulous resource for families that encounter microtia/atresia is The Ear Community.

In fact, we found a professional right on their website that recently worked on Christian's ear.  We chose the Rib Graft procedure and let me tell you--not even 2 weeks after surgery--his ear looks amazing.  The procedure itself was about 4 hours.  He was in pain for about 2 days, particularly in the rib area.  He stayed 1 night in the hospital and came home with a drain for 1 week and a headband with an ear protector to wear for about 3 weeks.   In about 6 months he will undergo the next procedure, where the ear is elevated and projected out.
1 day after surgery

Pet therapy.  No interest. 
A couple of nights after the procedure Christian wanted to see it.  I was concerned, since it didn't look healed and it is a process that is not yet complete--but he insisted.  He grabbed that mirror and beamed.  He beamed at his reflection in complete satisfaction.  It doesn't get any better than that.
2 days post-op

2 days post-op

6 days post-op

*Please note that again,  I am no expert and these are just my experiences as a parent relating to microtia repair.*

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