- J
- R
- R
On March 8, 2015 I went into labor with our daughter Peyton. After she was born we knew our lives were going to change, we just didn't know how much. She was born with what we now know is Goldenhar Syndrome. Goldenhar syndrome is a disorder that prevents the bones from forming correctly on one side of the face. Since the left side was effected she has no eye socket or eye; her left ear didn't form including the ear canal, ear drum, cocheal (that aids in hearing) outer and inner ear, her left jaw doesn't have the joint to completely attach it. She has a gap in her forehead that would normally be closed at birth but because her bones didn't form on the left her forehead didn't completely form over her forehead. She also only has one nostril since her left side was so affected
From now until she is 18 we are going to have reconstructive surgeries to put the left side of her face together. Our first surgery will be at the age of around 6 months of age depending on how big she gets. The surgeons will take a piece of her skull and split it in half like an oreo to fill the gap of her forehead and put the other half of the bone back. After this we will have other surgeries to add bone to her jaw and to stretch her skin in order help her face form with the other side of her face. These will be ongoing until 18 years of age, because the face quits growing at about 18 years old. Only then will they be able to completely attach the jaw and create that joint, they will also at this age reconstruct the ear and her nose and add a glass eye(if she wants).
Our little girl is amazing and has already beaten what the doctors thought she would be doing as far as eating. We spent 2 weeks at Primary Childrens in Salt Lake City. During our stay she never had to be on oxygen because she was breathing beautifully on her own. She also maintained her temperature where she didn't have to be on a warmer to keep her warm. During our stay there they had her on a feeding tube to help her get the nutrition that she needed and we were discharged on a feeding tube at home. Since being home we have not had to use the tube because she is determined to eat without it. She is amazing and our lives are forever changed!!!
From now until she is 18 we are going to have reconstructive surgeries to put the left side of her face together. Our first surgery will be at the age of around 6 months of age depending on how big she gets. The surgeons will take a piece of her skull and split it in half like an oreo to fill the gap of her forehead and put the other half of the bone back. After this we will have other surgeries to add bone to her jaw and to stretch her skin in order help her face form with the other side of her face. These will be ongoing until 18 years of age, because the face quits growing at about 18 years old. Only then will they be able to completely attach the jaw and create that joint, they will also at this age reconstruct the ear and her nose and add a glass eye(if she wants).
Our little girl is amazing and has already beaten what the doctors thought she would be doing as far as eating. We spent 2 weeks at Primary Childrens in Salt Lake City. During our stay she never had to be on oxygen because she was breathing beautifully on her own. She also maintained her temperature where she didn't have to be on a warmer to keep her warm. During our stay there they had her on a feeding tube to help her get the nutrition that she needed and we were discharged on a feeding tube at home. Since being home we have not had to use the tube because she is determined to eat without it. She is amazing and our lives are forever changed!!!