Lymphatic Malformation Surgery Chronicles - My First Year of Life!

When I was 16 days old, I had my first surgery. My parents tell me that I was at my 2-week check up with my pediatrician and she told us we had to down to Texas Children's Hospital in the Medical Center immediately and that she would be scheduling a surgery with a pediatric surgeon THAT day. What had happened was that one of the cysts in my neck had bled into itself. I guess that's bad. It sounds bad. It needed to be drained. They tell me it was a very long day of waiting - and they make sure to tell me that I couldn't have any milk or anything since I was going in for surgery. I finally had the surgery at like 9pm, after waiting all day. They told me it was like a 10 minute procedure, where they made an incision and drained the blood from the cyst. They packed it and didn't even stitch is up because it was so small. However, it's like the one scar you can still see on me today (without looking inside my mouth that is).

My next four surgeries were when I was between the ages of 6 months and 12 months old. They were sclerotherapy sessions and from the stories they tell me, these had a huge impact on my life.

For those that don't know, sclerotherapy is a procedure used to treat blood vessels or blood vessel malformations and also those of the lymphatic system. A medicine is injected into the vessels, which makes them shrink. It is used for children and young adults with vascular or lymphatic malformations.

We had to apply to be part of a research study to use a medicine that was not (and still IS NOT) approved by the FDA. It is called "OK-432" or Picibanil and it is meant for treatment of Lymphatic Malformation macro-cystic cysts. We were VERY fortunate to be accepted into that study!