My daughter (Ben’s mother) penned a moving statement of her thoughts and emotions about events so far:
As a mother, my heart is absolutely breaking. Today was our most difficult day by far. We knew the outcome of today’s angiogram was to determine a path forward. We also knew that there might be a chance that the Drs could treat this AV Fistula endovascularly, while Ben was still under anesthesia following the test. The neurosurgeon performing the procedure came and spoke to us once the test was complete, and felt that he could treat it in this manner with something called coils to fill in/close off the blood vessel causing the malformation, along with something called an arterial sacrifice, which is literally shutting down one artery to a particular area.
However, along with this came a “less than 50%” chance of Ben having a small stroke sometime soon following the procedure, which usually causes some double vision, but hopefully nothing more. Of course, there’s no assurance that would be it. Also, the Dr pointed out that most children come through fine, but there were some that did not make it off of the operating table.
At the same time, we found out that this is something that has to be treated at some point. He is not in an emergency state now, but if left untreated over a period of years, he almost certainly would face hemorrhaging in the brain and/or mental retardation. Traditional, cut you open surgery was also deemed not an option. In fact, I believe the Dr’s words were “disasterous.”
Facing all of this, we initially said do the procedure. However though the course of the conversation a Dr. Berenstein in NYC (whom J. had already looked into a little bit via online research) was brought up as being the world’s leading physician in cases like this. Ben’s Dr. said he felt confident that he himself could do this surgery, but that if we had any doubt or if, God forbid, something were to happen during surgery, and we hadn’t sought the opinion of Dr. Berenstein, and never would be able to live with our decision, then we could by all means choose to postpone today and set something up for Dr. Berenstein to review, whether that was simply him studying Ben’s films, or getting on a flight to NYC. Whereas Emory was the major hub in the southeast for neurovascular cases and saw dozens and dozens of similar cases a year, Dr. Berenstein is literally the best in the world at these and sees hundreds of cases a year. People from all over the world send their loved ones to see him.
Ben’s Dr. gave us a short while to make a decision, and after crying out to the Lord, and literally crying our eyes out, we chose to go with the second opinion before undergoing the procedure. The hospital is making arrangements, which probably won’t begin until tomorrow now since it’s so late, to get in contact with Dr. Berenstein and provide him with Ben’s test results. We may hear something before we leave here, or we may go home and then hear back. We may be going to NYC, or we may stay here, it’s all still up in the air.
As a parent, how do you know what the best thing to do for your child is? I pray fervently that the decision we made today was the right one. I am scared, words can’t describe to you how scared I am at this point. What we are facing is very, very rare, and Ben was most likely born this way. He is still sedated, with a breathing tube in, and will remain this way until the morning. We are in the pediatric ICU, and have been since about 3:00 AM.
I know I’ve asked for your prayers so many times already, but please don’t stop. Ben is my little angel, he is so strong, and still does not really understand what’s going on because he feels fine. Praise God, there are no other symptoms he is facing, other than the bulging eye, which is what got the ball rolling with knowing something was wrong, but even that eye doesn’t bother him. He is scared too, he’s hooked up to many machines and all he wants to do is go home. J. and I will never be able to thank everybody enough for their prayers, cards, gifts, and love shown to us through this difficult time. Please know we appreciate everything from the bottom of our hearts.