A long awaited update on "Tommy Girl"

Some of you may be aware that Kathryn (aka Tommy Girl - So named by Emily because she looks so much like me...) was born with a rare skin condition/birth mark called Nevus Sebaceous. A nevus is term used to describe most benign birthmarks and common moles. Sebaceous refers to the sebaceous gland that is connected to hair follicles throughout a persons body. Everything we have read states this condition is present at conception and is actually hereditary, but in no way linked to Emily’s pregnancy or their premature birth.

Initially, we were very upset over reading about it since we had a lot of unanswered questions. The doctors and nurses didn’t have a lot of information on the subject and most of them had not seen anything like what Kathryn has. They told us that it was not their concern for now because it wasn’t affecting her health and growth. In simple terms, what we’ve been told is that the skin condition is “hyper-development” of her glands and pores and affects the top of her left ear, sporadic areas on the left side of her head, and upper portion of her neck. After reading the information the hospital gave us, the most worrisome side affects from some forms of Nevus Sebaceous were seizures, mental retardation and even cancer. A couple of weeks ago, we were assigned an extremely helpful doctor who answered more specific questions of ours. She also was able to get us an appointment with a local plastic surgeon, who specifically works with children with serious skin conditions, to assess Kathryn’s head and further answer our questions. After meeting with the surgeon, he assured us that mental retardation and seizures are not a concern. He has never seen cases like Kathryn’s where those particular side affects were present and her behavior is not that of a baby who is mentally retarded. Obviously that news was a huge relief for us, however, cancer later in life is still the primary concern and therefore all the skin affected will have to be removed to reduce or eliminate this risk. Kathryn’s first appointment with the surgeon is scheduled for April for an assessment and he believes that he will start the first operation when she is a year and a half old. The operations will take place in stages and she will need around three total within a year’s time. Most of the affected areas are on her head and he explained the procedure as being small football-shaped incisions to remove the affected areas so that when the incision is closed/healed there will only be small linear scars that her hair will grow over. Because the top of her ear is affected so heavily, he will have to perform reconstructive surgery that will probably require skin graphs from her other ear or thigh.

Although this is a lot of scary information to comprehend for anyone, please know that this condition affects limited areas of her head that will someday be unnoticable. It no way affects her energenic personality and she is absolutely beautiful and mezmerizing to look at (...and I'm not just saying that because everyone says she looks like me). We still have many questions to ask and are concerned about the “early-life” operations and “later-life” cancer risks, but we are very thankful to know that 99% of this is cosmetic and will be dealt with as soon as possible so she is not negatively affected as she grows older.

Below are a couple of links with the medical terminology and information on the condition should you want to read up more:

Nevus info: http://en.wikipedia.org/wiki/Nevus

Sebaceous info: http://en.wikipedia.org/wiki/Sebaceous_gland

Original info they gave us: http://www.emedicine.com/derm/topic296.htm

On a side note, the girls are doing FANTASTIC and we have lots of good news and pics that we will post very soon!