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October 30, 1999

It is now over 5 years since Benjamin's surgery and about 2 years since Shauna's operation. We are pleased to report that there seems to be no significant side effects with either child (in fact, our pediatric neurosurgeon said we don't have to see him again, the kids look and act like any "normal" child should).

Benjamin's head is still slightly elongated from front to back, however no one seems to notice (the only time we really noticed was when we bought a bicycle helmet for him and there seemed to be some space around the sides). The most distinguishing thing about Benjamin is his advanced intelligence: he was speaking, singing, and knew the alphabet and how to count before he was 2; he was able to write his name before nursery school (3 years old... he was the only child in his class able to do that); he was able to read English before starting kindergarten; and he is alwasy asking questions about math and science. He is currently in a French immersion school and loves it!

Shauna's head is perfectly round now (we still get chills when we see the photo that we posted on this site, which shows such a pronounced extension of the back of her head). We don't know why hers seems to be better than Ben's (she had a ridge on the top of her head before surgery, Ben didn't, she was operated on 1 month earlier than Ben, her case seemed to be more severe than his). Although Shauna is not talking as much as Benjamin did at her age, we are not concerned at all. Shauna understands absolutely everything we say, and is an extremely active 2 year old. She loves gymnastics, music, and playing with everyone.

Both children have a scar on the top of their head, though their hair covers it quite well. The only people who notice are the barber or hair dresser. When the head is wet, it looks just like a regualr part in the hair. Apparantly their is a very short operation that they can undergo when they are a little older, to remove the scar altogether.

One of the most common questions we get is: "Given the same information, if faced with the decision to operate again, would you do it?" Our answer is a resounding "Yes!" Our children turned out fine. Although the days leading up to the surgery were very stressful, we always kept this in mind: We'd picture our child as a teenager asking us "Why didn't you get the surgery done when I was a baby and it was safer to do so? I can't get a date, I'm always being picked on, people look at me and think I'm stupid, and people call me an elephant man freak." It was with this realization that we concluded that a 2-3 hour surgery would be less painful and less damaging than a lifetime of teasing, taunting, and low self-esteem.

We know you'll make the right decision for your child too.

Sincerely,

Jeff & Rachel (sagittal@oocities.com)

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