Hayden's Story (Linear Nevus Sebaceous Syndrome, Facial Difference)

Posted on 09/18/2014

Adopt Special Needs: Family StoriesHayden was our tenth child and our third adopted child. She has facial deformities that were undiagnosed at the time of her adoption; the diagnosis in her file was Neurofibromatosis, although there was some question about that. She had what looked like tumors on her face, as well as some nevi. I have always been interested in adoption and probably having watched the movie about the DeBolts played into that. Our sixth child was our first adoption, and we knew we wanted a large family and adoption seemed like the way to go. Our first adopted son was a supposedly healthy child who turned out to have significant trauma in his past. While he had no medical conditions, parenting him was (and is) extremely challenging. Our second adoption was of a little boy with malnourishment in his history, as well as being cleft affected. The medical stuff turned out to be so much easier to manage than the emotional stuff, that we became open to quite a few special needs.

We weren't looking to adopt again when I saw a picture of our daughter, but I couldn't get her out of my mind. It seemed like a scary thing, adopting a child with such a facial difference, but she needed a family more than we needed to be comfortable with how life would be. Some of her surgeries are not pleasant, but they are straightforward. Because of her condition (Linear Nevus Sebaceous syndrome), it comes with some brain overgrowth issues and helping her learn in the best way possible has been challenging.

I have a very different perspective on facial differences and am much more aware of how society perceives them. It has made me much more of an advocate to tell these children's stories. I'm not sure there is anything I wish I had known about her particular syndrome ahead of time, but there were some specific things about her life before she joined our family that it would have been helpful to know. Our daughter has had three surgeries since she has been home and has two more scheduled for this year. Some of these are tissue expansions, which means I have become rather adept at injecting saline into a bag which has been surgically implanted in my daughter's head. It is not hard, but boy, does it feel wrong. The purpose of this is to expand the good tissue so that the surgeon can use it replace the nevus/sebaceous skin on her face. She does not enjoy having her head swell up like a balloon over the course of 12 weeks, and I don't enjoy it, either.

The actual facial difference is something that you will cease to see in a matter of days. You get to know the actual person behind the face and start to see that interior person rather than the deformity.