GoldenHar Syndrome

Harlie

lifeisgood — Sun, 22 Jun 2008 09:33:26 -0400

During my pregnancy with Harlie we learned of her heart and lung defects. They told us that she had a 5% chance of survival after birth, if she made it that far. She did, and as soon as she was born, we could see she had many more problems than we anticipated.

Harlie has Goldenhar Syndrome (a craniofacial syndrome), VACTERAL Association, and Congenital Lobar Emphysema. Harlie’s heart defects are: L-TGA, VSD, intermittent 2nd degree heart block, small right ventricle, 2 small Superior Vena Cava’s (instead of 1 large SVC).

Dennis Leach

Dennis Leach — Thu, 15 May 2008 18:54:48 -0400

Dennis Fredrick Leach III, has Goldenhar Syndrome. He was trached a few hours after birth, due to subglottic stenosis, he was 99% blocked, his airway has not improved much, he was supposed to have his trach out between 18 and 24 months, but he still has it, as his chest is sunken in, and his airway is not in good shape, the doctor said he will get it out someday. Dennis is 2 and 1/2 yrs. old, and is learning to sign well, and has adjusted well, despite his difficulties.

Connor Loescher

Connor Loescher — Fri, 09 May 2008 21:31:59 -0400

My son Connor James Loescher was born on the hottest day of the summer on August 9th. I was on my way down to the shore to celebrate my younger brother's birthday when Connor decided he did not want to go to the shore; he wanted to come out and play. As soon as he was born we knew there was something wrong. He was missing his right eyelid, there were several skin tags around his ear and his face was severely askew. The doctor immediately diagnosed him with Treacher's Collins. I didn't quite understand why they wouldn't let me hold onto my baby a little longer.

Hannah Scheib

Hannah Scheib — Fri, 11 Apr 2008 13:04:53 -0400

Hannah Marie Scheib