Four years ago today my husband and I huddled together in a New York hospital room waiting to hear the prognosis of our baby girl who was in surgery. Under the watchful eye and skilled hands of Dr. Alejandro Berenstein, she was bravely undergoing her 4th angiogram to determine if a 4th embolization procedure would be needed to repair the rare disorder that had so cruelly taken up residence in her brain, Vein of Galen Malformation (VOGM).
In 2005, my little family started a journey. It began when a pediatric neurologist gave us a devastating and confusing diagnosis, “your daughter has vein of Galen malformation.” For those of you who follow this kooky little blog, this is not news to you. I talk about it a lot. It consumed my life, my energy, my heart and every waking moment from October 2005 to May 2008. It’s a diagnosis so rare, many neurologists will never see a patient with it in their practice.
When you look out the window on the 14th floor of Roosevelt Hospital in New York City, you’ll see yellow taxi cabs, pedestrians crossing against the light, Starbucks coffee signs and the GE building looming against the sky. You’ll see these things but you won’t think about them. The room service tray might be there but you’ll only be able to pick at the eggs, and it will be hard to swallow the iced tea over the lump in your throat.
You won’t think about anything except when the phone is going to ring. The phone call that always comes, hours after you’ve kissed your daughter goodbye and left her sleeping in the arms of the anesthesiologist. The phone call that comes from the operating room, telling you how many arteries they’ve closed off in the brain this time. Hoping you won’t hear the doctor say there’s been a complication. At least that’s the way it’s always been for us, particularly on May 14, 2008.