January 24, 2010

The begining of Trey's story and ours.

When our son was born we began a new journey into parenthood that included the journey of dealing with Goldenhar/Hemifacial Microsomia with microtia and atresia. What all that means for our son in plan English is that one side of his face did not develop normally so his left side appears smaller and his external and middle ear did not develop on that side. We had no idea what i all meant except that he looked different so our journey began.

Starting at a week old we had medical tests to make sure his eyes, kidneys, spine and heart were fine and thankfully they were. So all we have to address is his lack of external ear, unilateral hearing loss and a smaller jaw. We see an ENT doctor 1-2 times a year to make sure his good ear is working fine. We had to go do and ABR hearing test to verify the hearing on both sides after he was a year old which meant he was sedated. If only we knew to do this test when he was an infant where they do the test while the baby sleeps so no meds to knock them out. We didn't like our first ENT who wasn't much help to us but love Dr. Mancuso our current ENT. We also see a craniofacial team that will address the ear and jaw issues. We know Trey will require jaw distraction surgery and lots of orthodontics work. So we also see a dentist who is part of the craniofacial team.

So far Trey is a happy 2 year old who has not shown any problems. His speech is normal and he is happy and very very active 2 year old. He is social but can be reserved especially in noisy environments which is not surprising since he can not locate sound well. Around age of 2 he started noticing the differences in his 2 ears but did not seem to care which I would also expect do to his age. Sometimes he doesn't hear us when we try to get his attention and other times I am sure he DOES hear me but ignores me, again age appropriate behavior.


  1. So-which Dentist do you take Trey to? We have so much to talk about, I'm so glad I met you and Trey, my 1-yr-old has HFM and unilateral hearing loss too, and he already had one surgery, scary, but necessary.

  2. Hi, I have a son 4 months old who had a same problem like your son. Everything is same, microtia atresia and troticolis but in right side of head. Also he had Goldenhar/Hemifacial Microsomia. My english is not so good i am, from Serbia and I have somne questions for you, and I hope you could and want help me