Kate's Story
Hello, my name is Katie Gutierrez. Born and raised in a small town in Chicago, Illinois, I was a healthy happy baby. I had an older sister and a younger brother on the way. As a small baby, my mother noticed something different about me, as she would always say, "something special," about me compared to my sister. I had a lazy left eye, and by the time I was two my head seemed slightly bulging, but not by much. However, my mother had this keen trait, and she could spot anything peculiar a mile away.
Traveling all over, hospital to hospital, every doctor said I was fine, and not to worry. Finally my mother could not stand it any longer and she saw a specialist. (Given the fact that back then in the early eighties this was uncommon) this doctor confirmed it, I was born with Crouzons.
Unfortunately, my disease would not affect me by much, but since my mother and father did not really know much of the subject, they had no option but to believe what the doctors were saying. Finally my first doctor, by the name of Schaeffer, decided to perform, all of the major surgeries we have today, into one. The surgery last almost 16 hours, now remember I am only two, I almost died. He crushed the left side of my face, destroying almost every bone there, my right side was crushed too, but not as bad, he cut from ear to ear, and by the time I was finally out of my three month coma, the frontal portion of my head, which would be my face, was about and inch and a half lower than the back of my head.
All he had to do was wait, nothing needed to be done. So in my case, things could have been a lot simpler, but God has His own reasons. Saved, by my second doctor (my hero) by the name of Bauer, he restored most of the bone. Nothing looked the same but he worked patiently with me and I spent most of that year in the hospital with surgeries. However, I was a good kid about it, I loved playing with the other kids.
I grew up to be very lovable. I had a fun and outgoing family who supportive me very much. And I am very grateful for them. So from the age of two up until the age of nine, these are some of the surgeries I had : (not including tonsils, adenoids, and at least eight surgeries for tubes in the ears) The Shunt put in for protection, the MonoBlock (which was done by Schaeffer), Lafort I,II,III. I had the Lafort III done three times. Also they worked on my forehead three times… Those are from what I can recall. I had a hernia when I was two, right after they placed the shunt in, because all the fluid built up. I also have some slight abnormalities with some joints. No one ever noticed them except me until now. For instance, when you place your hand straight out palm facing up, you see that your elbow is down, and your ulna is facing upwards to. However in my case when I put my hand out in order to have my ulna facing upwards that means that my elbow has to twist in towards my body, which hurts to an extent, and my palm is now facing slightly upwards and slightly to the side. It is no big deal, but it is odd. I also had a problem with my ankles. I played a lot of sports when I was little, and finally in sixth grade they started to hurt real bad, especially during bad seasons. I got it checked out and they realized that I could never turn my feet left to right only up and down, which caused pain in my ankles when I would run and stop and move side to side. This created severe tendentious. I had surgery on that. They took an inch or so of fat out of my rear end and placed pieces of it between the bones in my ankles. I was in a wheel chair for six months almost. It was not that bad I am doing great now, I am in college and on my way to finishing up my surgeries. I still have some left but nothing that bad. I have some touch ups and some minor adjustments needed, then there are those surgeries I would like to call "The fun ones," whereas I get to pick out a new nose if I want a nose job, which in my case I do because I broke my nose during indoor soccer last season! OOPS!! Then there is the face lift, look out Hollywood here I come! I am also considering the hair transplant to fill in the scar around my head, and then the scar removal surgery. I want those scars out of there! other than that I have many friends and I am 95% of the time positive and happy, otherwise moody like any other "normal" teenage girl!
Written by: Kate, 18 yrs old with Crouzon's in Chicago, IL
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