Ben is a bright, loving, normal seven-year-old who at the age of three was found to have an arteriovenous fistula in the brain. This is a rare and dangerous congenital disorder in which there is an abnormal connection between an artery and a vein. It causes pressure to build up in the brain, and in Ben’s case, also behind one eye. An AV fistula can lead to physical and mental regression and ultimately to death.
In May 2014, Ben and his parents flew from Georgia to New York City where he had two brain surgeries within a week. In the first surgery, 18 tiny platinum coils were placed in the fistula, slowing the abnormal blood flow. In the second surgery, medical-grade superglue was used to completely close off the fistula.
A year later when the family traveled to New York for Ben’s first annual checkup, Ben’s doctor (Dr. Alejandro Berenstein) discovered that the fistula had re-opened, and another fistula had formed. Ben’s condition was life threatening. Another surgery had to be done.
In June 2016, after the second annual checkup Dr. Berenstein declared Ben to be cured! The original fistula is completely closed, and the fistula that formed the previous year is gone as a result of decreased pressure in Ben’s brain.
Ben’s medical condition at such a young age affected the growth of the muscles in one leg. He continues to walk with a slight limp and must wear a leg brace at night, but he can run and play and participate in organized sports such as soccer, basketball, and baseball.
We are so grateful for Dr. Berenstein and his medical team, for the Ronald McDonald House in New York, and for all of our family, friends, and blogging acquaintances who have followed Ben’s story and held him in your thoughts and prayers.
This blog chronicles our family’s attempt to make sense of all that has happened and continues to happen to this precious child, my grandson. Several of the early posts also appear in unexpectedincommonhours.wordpress.com.