 |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Welcome to my Page. |
|
|
|
 |
|
|
|
This is the story of my birth and what Goldenhar Syndrome is. |
|
|
| When mommy found out she was pregnant with my she was very scared, but also very excited. Mommy got even more scared when at 10 and 12 weeks pregnant she had some spotting, she thought she was going to lose me! But I hung in there (I'm a little stubborn). When mommy was 34 weeks pregnant with me I decided I wanted OUT, but Mommy and the doctor said no and made me mad, so I stayed in and refused to leave! The doctor said he would put mommy in the hospital and induce her. I wasn't sure what he ment, but Mommy explained that I was going to come out weather or not I wanted to. Well as you can imagine I wasn't too happy about this but I had no choice. |
|
|
| At 7am Momy and Daddy went to the hospital and the doctor gave mommy pitocin, at first it was just a little bit, but as the day went on they gave her more and more. Then they broke into my house and made all my amniotic fluid go away, AND they stuck this wire to my head that wasn't too comfortable. This made me really want to come out. Mommy was hurting really bad so they gave her stadol. This made mommy and me very tired, but I was going to come anyway (I just couldn't get out yet!) |
|
|
| I was pushing down making all the water go away, mommy asked the nurse to change the pad she was sitting on, the nurse said no, so mommy got up and gushed water all over her shoes. The nurse wasn't too happy, but she shoulda listen to my mom! The doctor checked mommy and said there still wasn't room for me to come out, but he'd give Mommy something to make the pain go away. Mommy had to roll on her side and I didn't like this so I kicked her. Mommy cried for a second because the doctor gave her a shot in the spine. AND he did it wrong and made mommy fell all woosy in the head. She still hurt very bad, but there was nothing else the doctor could do. A few minutes later Mommy said she HAD to push. The nurse said no again! Well Mommy didn't listen so the nurse went and got the doctor, who still said there wasn't enough room. I was coming anyway. Then all of the sudden I couldn't breathe very well, and the top of my head felt cold! |
|
|
| I was starting to get very tired, the doctor told Mommy to PUSH, and my head got colder and I couldn't breathe, then she pushed again and the doctor stuck something called forceps in next to my head, this hurt very much and I still couldn't breathe, Mommy pushed again and I popped out so fast the doctor almost didn't catch me. The nurses later nicknamed me Rocketman. I weighed 7 lbs 13 ozs and I was 19 inches tall. I had a really big head though because I'm so smart! |
|
|
 |
|
|
|
|
Well when I came out, the doctor noticed that I was missing parts of my ears, but he didn't tell mommy. I was also a little blue so they took me away from Mommy and Daddy and into the nursery. Mommy came to see me, and I fell asleep when she sang our special song. I had to go to another hosptal that night, and I missed Mommy very much, but Daddy was there so I was ok. Later that week, after LOT'S of tests, they said I had Goldenhar Syndrome. |
|
|
|
|
|
| So what the heck is Goldenhar Syndrome? Well the anwser isn't as simple as you might think. Goldenhar Syndrome is a series of birth defects that has many symptoms ranging from mild to severe. My Goldenhar Syndrome includes: small malformed ears with no openings (though I can hear pretty well!) an assymetrical jaw, and nose (one nostril is a little bigger) skin tags on my ear, a short neck, scoliosis (curvature of the spine) a dialated kidney, a thickened bladder wall, a heart murmur at birth that has since gone away, and the nerves connecting the two halves of my brain are a little shorter than normal. I have a slight speech delay and started walking a little late, but other than that, I'm pretty ok. |
|
|
 |
|
|
 |
|
|
As you can see, at six days old all I wanted to do was sleep! You can see my ears very well in these pictures my grandma took. The bone on the right one is more developed, so the Doctors think I can hear better out of it.
Because of the way my ears formed, I get to wear a cool bone conduction hearing aid (that blue band on my head at lower right), with it I can hear just as well as anyone, if not better! I will have surgery when I am older so they can make me ears and open up ear canals, then I won't have to have any help hearing. I also have obstructive sleep apnea due to the way my tonsils and adnoids formed, I will have them out soon so I can breathe easy! Wish me luck and be sure to go the the links below to learn more and help kids like me. THANKS! |
|
|
|
|
|
|
|
|
 |
|
 |
|
|
|
|
|
|
|
As of yet there is no known cause for Goldenhar Syndrome, though it affects about 1 in 5000 babies born in the US and abroad. There is a WONDERFUL support group for parents of children with Goldenhar Syndrome and adults with it too. This list was founded by Barb Miles of Canada. If you wish to join the list enter your e-mail address below and click JOIN! |
|
|
|
|
 |
|
|
|
|
|
|
|
|
| To learn more about Goldenhar Syndrome you can visit one of the following links or simply type "Goldenhar Syndrome" in your search engine. |
|
|
|
 |
|
The Goldenhar Syndrome Support Network |
|
|
|
|
|
|
|
|
|
Goldenhar Syndrome info from NORD |
|
|
|
To Help Support the Goldenhar Syndrome Support Network You can go to one of the following locations: |
|
|
|
|
|
The Auction and Shopping Site |
|
|
|
|
|
Join igive.com and support the GSSN |
|
|
|
 |
|
|
|
 |
|
|
|
|
|
|
|
 |
|
|
|
 |
|
|
|
| PREVIOUS PAGE |
|
|
|
|
NEXT PAGE |
|
|
|
|
|
|