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I have a child with atresia/microtia. What do I do?

1) Take a deep breath. None of this is your fault. There is absolutely NOTHING you could have done to prevent this from occurring. There are specialists who treat ONLY atresia and microtia, and parents who have “been there, done that” who are willing to help you through the process.

2) Learn from others who have already traveled this road, by reviewing some of the blogs written by parents who have “been there, done that”

3) Get some basic testing done by a pediatrician or ENT to rule out any “hidden” syndromes. This will include a kidney ultrasound and possibly a heart echocardiogram. This is ESPECIALLY important if there is any other history of atresia, microtia, other unexplained hearing loss (not age related), or kidney problems with any of your child’s blood relatives.

HFM and Treacher Collins are generally very visible as there are other facial anomalies besides the atresia/microtia that are obvious. BOR (Brancio-Oto-Renal) syndrome is trickier as most of the other kidney/heart symptoms are hidden. If BOR Syndrome is suspected, a CAT scan will generally then be ordered to rule out Enlarged Vestibular Aquaducts (another common occurance in BOR Syndrome. Approximately 6 % of children who have microtia who do NOT have TC or HFM do have BOR Syndrome.

4) Have an ABR or OAE test done (in infants) or a regular audiogram (in older children) to ensure that your child has only the standard conductive hearing loss associated with Microtia/Atresia, and not any hidden sensineural hearing loss.

5) Decide if you want your child to be aided early, and how. For Bilateral Microtia/Atresia, eary aiding is essential for normal speech and hearing development. For Unilateral Microtia/Atresia, it is still considered optional by the vast majority of the medical community, however, studies show that children with unaided unilateral hearing losses are 25 % more likely to have to repeat a grade in elementary school. BCHAs are the least invasive hearing aid options, but BTE aids may be required if your child has sensineural loss in addition to conductive loss.

6) Have your child assessed around 12-18 months by your local early intervention program. They will determine whether your child requires any speech therapy, and provide this therapy for free!

7) Think about your communication options. Do you want your child to learn to sign in addition to speaking? Signing can be taught to children as young as 7 months old, and is even being taught to children with normal hearing because children can sign before they can speak. Look in our store section for links to Amazon for books on teaching babies to sign. All your Amazon purchases through our store benefit the Atresia Microtia Foundation.

8) Decide which option to go for microtia reconstruction: Rib Graft, Medpoor, Prosthetics, or no reconstruction at all.

9) Come to an atresia/microtia conference, and meet the doctors who specialize in reconstructive surgery.

10) When your child turns 3, meet with the school personnel at the school your child will be attending and put an IEP or 504 in place outlining any special accommodations your child will need in preschool/kindergarten. Most common are an FM system and Speech Therapy. Look in our store section for links to Amazon for books on developing an appropriate IEP or 504. All your Amazon purchases through our store benefit the Atresia Microtia Foundation. If your child HAS been receiving early intervention assistance, a transition plan from early intervention to school is required.

11) Relax!! In the end, giving your child the keys to the car will be far more stressful than anything pertaining to their atresia or microtia (even though it doesn’t seem like it now).