The Ugly Truth

There is an ugly truth about having brain surgery. They shave parts of your hair. I have had several parents ask about how we dealt with the hair issue, and how Hailey dealt with it. So I thought that I would address that issue in hopes to ease some of your minds.

When Hailey had her first surgery I wasn’t really all that worried. They only shave a small portion of hair underneath her ponytail, so her hair laid over it perfectly. When we went back, and she had to have the other surgeries, it became clear, that this would not be the case, and I worried. (It is important to note that feeling this way is normal, and ok)

Comments by others and myself were quickly made about Hailey’s hair. She heard them and became self conscious. That is when I decided it was time to develop a different mind set.  Sure, we are all a little vain, and no one wants people starring at your child. But it’s more important that we focus on the fact that our children survived. When I caught onto this mindset it was much easier for me to discuss things with Hailey. I was able to put her mind at ease, and together we came up with simple things we could do to make her hair look better.

• Scarves
• Headbands
• Covering the front of her head with her bangs
• Letting her see other children with no hair, so that she didn’t feel alone.
• Talking to her about inner beauty, instead of focusing so much on outer beauty.
• Not saying much about where she could hear.
• Allowing her to express her feelings about it.
• Allowing her to tell others why her hair was shaved, if she felt uncomfortable, or saw them starring.
• Hat’s
• Encouraging her everyday, and letting her know how much you love her.

The most important thing that we learned to do was to drop it. It is possible to fix her hair in such a way that hide most of it. But when we as mom’s draw attention to what we are doing, the child becomes anxious, and self conscious. Since we learned to drop it, Hailey learned to drop it, and that was best for everyone.

Wednesday Morning June 16th, I noticed that the back of Hailey’s hair was soaking wet. I asked the Nurse about it and she said that Hailey had been sweating. I was fearful that the bacteria from the sweat would get in the incisions and cause further infection, so I asked her is we could wash her hair. While the nurse was gone to get the stuff needed to wash Hailey’s hair, the NS came in. he immediately questioned me about Hailey’s hair. I told him that the nurse had said she was sweating. It turns out her incisions were leaking CSF. He immediately set her up to put stitches in to stop the leak.

Upon further inspection they found that there was swelling in the Brain, and Fluid build up. In order to release that pressure they were going to have to place an external shunt to drain the fluid. They were also afraid that she had a reaction to the derma patch, and were going to have to re-open the incisions from her first decompression and clean the are and see where the leak was coming from.

She was taken back to surgery and about 2 hours later they informed us that all went well, and that they found the leak and cleaned things up.




She was pretty out of it the rest of that night. It breaks my heart to see her this way, and to know that there is nothing I can do to help her.

(links were not working today, but I will come back and add them later. Sorry!)