A month ago, Luke had his appointment with the specialist at the Vascular Anomalies Clinic at Seattle Children's Hospital. I wrote an e-mail to our family members, updating them on the appointment, and I think I will just paste that e-mail here...
Today we had an appointment at Seattle Children's to find out more about Luke's malformation. The specialist (he is an ENT who specializes in vascular anomalies) spent a lot of time with us and was quite thorough. He had us get an ultrasound of Luke's malformation there also.
He assured us that we don't need to be extremely worried about Luke. He sees these all the time though, so that's easy for him to say. He said that it's best to watch it for a few months and see what it's going to do. Unfortunately, in the last week or so, Nate and I have noticed that it has begun to grow in length, toward the back of his head. So that's very frustrating.
Anyway, we are going to watch it for at least 6 months. He will most likely end up having surgery that will remove the entire thing. It's basically up to us when we want to do the surgery, but it is not recommended to do general anesthesia on infants under 6 months, if you don't absolutely have to. We are thinking that we would want to have it done when he is around a year old. We will see what happens over the next few months though.
He was very reassuring about the surgery and said that it has a great success rate. There is always a chance that it could begin to grow again, but generally he is able to remove it all so that it doesn't grow back.
As far as an official diagnosis, he said it is a venous malformation of the scalp. Luckily, it doesn't look like there are any arteries involved, just veins.
We are feeling OK about things. It's frustrating and stressful to have any kind if medical issue with your child, but I know that it could always be worse. We believe that he is going to be fine in the end, and eventually his hair will cover any scars.
Waiting to meet with the doctor
