January 24, 2010

Finding support and information on atresia options

The hardest part is finding out nothing can be done until Trey is older. As a parent I just wanted to do what I can and as soon as I can but I have had to learn patience which isin't the best thing for me. Thankfully I found a yahoo group support site for microtia and atresia. Since many kids who have microtia and atresia also have HFM this group site provided so much needed information on all levels that we needed.

We found out our choices in how we can address these issues. For the atresia we could do a BAHA (soft band or surgically implanted), canalplasty(creating new canal and fixing middle ear) if a good candidate or of course nothing. To begin this process you have to do an ABR test to make sure the affected ear has only conductive hearing loss, if the nerve is not functioning not much can be done. A ct scan can be done to determine if atresia repair surgery(canalplasty) is an option. Very complicated surgery and the best doctors will review ct scans for free. CT scan should not be done before age 2 1/2 or you risk having to do it all over again, child needs to be big enough for the inner and middle ear parts to show up. Unfortunately the ct scan showed Trey definitely is not a candidate. Not surprising to us, he had less then 20 percent chance to be a good candidate because he has HFM/Goldenhar (side note, we prefer HFM but officially he is diagnosed with Goldenhar, the geneticist who diagnosed him considers HFM to be the same as Goldenhar while others differentiate Goldenhar for when the eyes have dermoid cysts or skin tags, all of which Trey doesn't have)

We can do a BAHA (bone anchored hearing aid) that could be used to provide some hearing since his inner ear (the nerve) works. There are 2 options with that, one is a soft band type that goes on with the use of a band that sits on the skull, no surgery and it can work well, just that it is very expensive and our insurance will not pay for it. They would pay however if we had the same device surgically implanted.

We have elected to wait and see if it would be useful or needed before we do that surgery. One doctor in town would have done the BAHA surgery already, I kinda freaked out about the permanent of the surgery and that the doctor didn't seem to care if the posts goes to far into the skull and rests on the outer layer of the brain. Infections are not uncommon with the posts of the BAHA so I am just not ready to go for it. We tried a softband that was loaned to us by the audiologist but Trey would not keep it on for any longer then a few minutes, of course he was only 18 months old and he knew he had complete control over if he would wear it or not. Maybe in the future we could try it again.


  1. Your geneticist was wrong, Trey has HFM, Goldenhar's involves the kidneys, spine, heart, etc. Trey's HFM looks mild too. Stephen had skin tags next to his right ear, and two cleft lips, still HFM.

  2. Also,
    Stephen kept taking his BAHA off too. Our new ENT, (couldn't stand Dr. Fu*c*) seems to think that he will adjust and use his good ear and be just fine.