Chelsea had her 1st surgery when she was 9 months. Then 2 more when she was 15 months and again at 26 months. Basically, they were all the same type of surgery - to rebuild her forehead. Crouzon patients heads tend to grow upward and not develop outward when they are younger. So they need to reopen up the soft spot to give brain growth and then build the forehead which gives more protection for the eyes. The eye sockets do not develop correctly either, which tends to make the eyes bulge outward.
Sometimes, people will mistake Crouzon patients as Down Syndrome because of the look of the eyes. Her surgeries were done in Grand Rapids by a wonderful doctor - Dr. Mann. He is a excellent doctor who really cares for his patients - of whom are mostly children. I believe this 1st surgery took about 8 hours to complete. He made an incision which went from 1 ear over the top of her head to the other ear. Using various bone segments, he rebuilt the forehead out. This picture is of the 2nd surgery but gives you an idea of how she looked about 3 days following. Because of all the work done on the head, the eyes swelled up a lot. I have a picture somewhere of her swollen eyes but cannot find it now. It's incredible how much they could swell. The poor little girl couldn't see for days or understand what was happening. That was one of the worst parts. If you can notice, there was a drainage tube on top to catch the fluids. Once her eyes opened, what a difference in her personality! She always stayed in the hospital for 1 week.
Enjoying a stroller ride and heading down to the playroom.
Getting an appetite back and trying out a grilled cheese sandwich.
Her 2nd surgery lasted 9 hours and her 3rd one was for 12 hours. The doctor had to stitch bone pieces the size of a thumbnail to form the forehead, so you can understand why it took so long. He told me that they had to have some donated pieces shipped from Detroit during this last surgery because she needed so many. I have to laugh a little to myself when I hear people talk about having a long surgery and then they say it was 4 hours or so. (ha ha - Dave's last surgery was 15 hours. We were first in the waiting room and the last to leave; around 12:30 am) We also had people donate blood for her because neither Dave nor I had the right type - I have a negative factor in my blood which causes trouble.
After she would come home, she had to wear a protective helmet. Just in case of falling or something, we didn't want any damage to the larger opened soft spot. Here she is with the helmet that she wore after her first 2 surgeries.
This is a different type of helmet that I found in a medical magazine. She used this after her 3rd surgery. It was quite as bulky and didn't have so much of a "medical" look. Sometimes people would think that it was a bike helmet so we didn't always draw so much attention to ourselves.
Thanks for bearing with me in this somewhat long and detailed story. I hope it gives you more understanding of what life was like. These weeks were always long and hard but it seemed that we would always meet people with more troubles than we were having. We also had great families who would help us through it too.
The next time I give an update on this, I will cover her major surgery that happened in Chicago and more of how she got her picture in The Chicago Tribune.
