"I wish I had some better news regarding your son, Mrs. Travers, but I'm afraid I don't." Dr. Krithi Anaya's dark brown eyes stared intently into mine as he broke the news to me. He took a deep breath, then steepled his long, trim fingers on his desk as he continued to speak.
"Your son has had noticeable delays over the past few months, am I correct?" Dr. Anaya asked me.
"Well, the tests we have been running on Keegan have pointed to a possible diagnosis of Canavan's disease. Basically, it is an inherited neurodegenerative disorder belinging in the leukodystrophy group of associated diseases", Dr. Anaya said. "He will never learn to walk or talk; what skills he has developed now will only diminish, as will his hearing and sight. He will never get better: the disase he has is progressive, ultimately leading to death by the age of four if he's lucky enough, but some hardier souls live to their teens or twenties."
I sat there, stunned, letting the "good doctor's" words wash over me. All I heard were the words "never will learn to walk or talk", "progressive", "death". No!! my brain screamed. Dr. Anaya has to be talking about somebody else's child! He can't possibly be talking about my precious, beautiful Keegan!
"I-Is there anything more?" I stammered, tears brimming in my eyes, threatening to spill. If there was, I didn't want to hear what Dr. Anaya had to say, but knowing that if I wanted my questions answered, he would have to tell me exactly what was going on with Keegan, my precious 10 month old baby son.
I had a million questions. Most were unanswerable, but some were able to be answered ... and none of them good. There was no treatment option for kids with Canavan disease; all one could do was keep them comfortable and treat different diagnoses (seizures, being fed by a tube due to losing the inability to chew or swallow, or whatnot) and pray for a miracle, a miracle that would probably never happen. Doctors were predicting that Keegan wouldn't live long enough to see his fourth birthday; if he did, he would be extremely "lucky" (if you could call dying of a fatal disease "lucky", I reasoned).
All Dr. Anaya could do was shake his head sadly. At that, I began to cry. And cry. And cry. My heart broke into a million pieces, but most of all they broke for Keegan, who would never have a normal childhood. He was just a baby; he did not deserve this!!
I knew I wouldn't be in any condition to drive home. I called my husband, but he had already left for work. I then called our next door neighbor and briefly explained what was going on. Carol said she would come pick me up and drive me home. Home to my baby boy, who was currently being watched by my mother. I would then have to break the news to her and to my husband once he came home.
When I got home, I picked up Keegan from his crib and held onto him, where I then continued to cry. My mother, distressed at the sight of my tears, tried to ask me what was going on, but I couldn't answer her. I was too upset at the devastating news that Dr. Anaya had delivered to me regarding Keegan.
~To be continued.~