A year ago, we learned that Lydia had a condition called “craniosynostosis.” As a little background, this is condition in which one or more of the sutures (space between the cranial plates) fuses prematurely. These spaces allow the brain room to grow.
Fortunately, with craniosynostosis, the brain is normal and still wants to grow. However, it will grow in the path of least resistance. Thus, in Lydia’s case, since the brain couldn't grow forward like it wanted to, it instead grew wider.
Thus her treatment was two-fold. Part 1 was the surgery to reopen the closed sutures.
Part 2 is helmet therapy for 12-15 months to help mold the head to a more normal shape.
Many people think that the helmet is for protection, but rather it is to hold the areas that overgrew before surgery and allow her forehead to overgrow in order to catch up. It is so important to catch the condition early since almost 2/3 of physical brain growth occurs in the first 12 months of life! This is why the helmet is able to work so well.
We are really amazed at the results. The surgery that Lydia had has only been available for the last 6 years. There is another more traditional surgery that is available, but it is much more invasive and I believe the results aren’t as good. We were blessed to be able to have Lydia’s surgery performed by the surgeon that pioneered the new procedure!
Lydia with Dr. Jimenez
Our 9-month post-op appointment went great. There is a ratio that the doctors take that measures the width of the head vs. the length. Normal is around 80% (meaning that a normal person’s head is somewhat longer than it is wide). With Lydia, she started out at a 91% meaning that her head was more like a circle. At Lydia’s 9-month post-op appointment she measured at an 80%! The doctors also give us a scanned image of her head showing the before and after images side by side.
Bird's eye scan, pre-op and 9 months post-op (the 'holes' are just part of the scanning and not her soft spot)
Side view scan, pre-op and 9 months post-op
At this appointment, the surgeon showed me pictures that he had taken the day before Lydia’s surgery. I was shocked. I hadn’t remembered how bad her head shape was! Here are her pre-op pictures and underneath how she looks to day. I think the difference is quite dramatic!
Day before surgery, side view -- notice the area around her eyes and how the top of her head had grown higher and how the back of the head was becoming flat
Today, side view
Day before surgery, bird's eye view -- notice how wide it had grown and how round
Today, bird's eye view
Day before surgery, front view -- notice how her eyes slanted downward and her uneven forehead
Today, front view
The doctor said that since Lydia’s head is looking so good, she will be able to end helmet therapy 3 months early! Thank you for your prayers! We praise the Lord for such wonderful doctors and medical care and how great Lydia looks. I know I will never take a round head for granted again!
~Kelli
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