Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 >Is there a name for the birth defect they thought she had? I would be interested to know. Yes, the birth defect is called " hemifacial microsomia " . It literally means " half-face small " . It can range from barely perceptible to severe. If it includes more underdevelopment than just the face/head (such as heart or kidneys) it is called " Goldenhar Syndrome " . Torticollis affects maybe 50% of people w/this, but is frequently spinal. So we had x-rays and I sobbed for joy when I found out Abby's tort was muscular. The symptoms typically include an underdeveloped ear, smaller or underdeveloped jaw, unequal soft tissue (cheek fullness), and sometimes the eye orbit or cheekbone. It happens completely randomly in about 1:5000 births. There is no real explanation for it, but researchers think that it happens on the 28th day of gestation. It isn't genetic. Today I'm back to thinking this explains Abby's ear. Oh what a roller coaster ride I'm on. Ugh. It isn't even that it is that bad w/Abby, but in my heart of hearts I want her to be perfectly normal. It is selfish of me to say that when there are children w/things unimaginably worse, so I try to be thankful. But instead I find myself doing everything possible to straighten her out. I'm constantly stretching her, she's barely ever on her head, and its tummy-time, tummy-time, tummy-time! Didn't mean to go on for so long...I'm just having a rough day and needed to vent. Abby's birthday? March 13th. Thanks for asking Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 In a message dated 7/5/2002 6:28:29 PM Eastern Daylight Time, christyludwig@... writes: But instead I find myself doing everything possible to straighten her out. I'm constantly stretching her, she's barely ever on her head, and its tummy-time, tummy-time, tummy-time! Christy, Don't feel bad for doing this- your doing the best thing possible to help your child- of course we're thankful that our children are not worse, and I think Doctors sometimes make us feel like we're soooo superficial for wanting the "perfect" child- but that's not the case- if we can help 50% of the problem, why wouldn't we? Keep up the great work mom! Mom Quote Link to comment Share on other sites More sharing options...
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