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It was December 31,1999, and the world was in celebration. People everywhere were eager to usher in the new millennium, excited to be a part of this historic passage of time. As the clock ticked down to midnight, people embraced their loved ones. Millions watched as the Y2K bug failed to cause the end of the world.
But, for our family, the world did come crashing down.
Instead of toasting the New Year with family and friends, my husband and I stood in a crowded emergency room. A distracted doctor explained that our two-year-old son was bleeding in his brain, and he may not live much longer.
It was almost impossible to believe that our son could appear so normal that morning and now he was lying on a stretcher fighting for his life. Earlier, Jake had helped me bathe his baby brother and decorate for the night’s festivities. It was only after waking from his nap that we noticed the first signs. Jake was unable to speak.
Sensing that something was seriously wrong, we rushed him to the urgent care. The doctors didn’t see a problem until Jake suffered a seizure. Paramedics responded quickly, rushing Jake into the ambulance.
Inside the speeding ambulance, while the siren wailed, Jake remained eerily silent. I watched in stunned disbelief as paramedics connected Jake to oxygen and started an IV, all while he lay quietly still. I wept and prayed just to hear my baby cry.
I was encouraged when Jake finally did cry, but that was short lived when the doctor held up his CAT scan. Deep in Jake’s brain were areas of bleeding, but the doctors didn’t know what they were or why they were there. The one thing the doctors knew for sure was that they were not equipped to handle a problem like this. We had to go to Children’s Hospital in Los Angeles.
We waited three days before an MRI would confirm a frightening prospect. Jake had two Cavernous Malformations in his brain; one had grown to the size of a gold ball. There was only one course of treatment -- brain surgery.
Jake underwent a craniotomy on January 4, 2000. For the first time in days, our spirits lifted when the surgeon greeted us with the thumbs up. After a few setbacks, Jake recovered in ICU and we went home. In a matter of weeks, he was back to his old self.
We were fortunate in this case, but one CCM still remains. This lesion lies in the center of his motor cortex. Another surgery will likely leave Jake with paralysis, and excessive bleeds could cause hydrocephalus. And, of course, there is the very real possibility that new CCMs will develop as Jake continues to grow.
We could not have foreseen how those dramatic events of Deedmber 31, 1999 would change all of our lives. What we can foresee however, is a cure. We are compelled to share that vision. Will you share our vision and help us provide the power to cure?
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