It has taken me several months to pull myself together, to sit down and take a breath. I don’t imagine this will ever get easier or hurt any less. But I have to tell this story and hope that because of it, one less child will die from meningitis, meningococcemia, or any meningococcal disease.
Phoenix is my beautiful, intelligent and amazing son. He was loved, cherished and cared for by his parents and his twin brother, Gryphon. In just a few days, I went from being a happy mother of two playful little boys to a grief-stricken mother trying to find meaning in such a tragic death.
On the morning of February 9, 2012, Phoenix woke with a mild fever but remained active the rest of the morning. After eating lunch, he laid down for his nap around 2:00 P.M. He woke up with vomiting and diarrhea. Being the mother of twins, I am used to having both boys sick at the same time, so I thought it was a bit odd that Gryphon showed no signs of being sick at all. When I saw that Phoenix’s temperature was 104 degrees, I strapped him in the car and headed to the emergency room. At the ER, I noticed a small spot on his arm. Things started moving pretty fast with the doctors and nurses checking his vital signs and asking me a lot of questions. I realized he was now acting very strange … as if hallucinating.
Nobody, not even the doctor, recognized his symptoms. The hospital had decided to just keep an eye on him and monitor his temperature. When I took him to the bathroom, he kept losing his balance. I knew something was terribly wrong and screamed for help. The doctor did a spinal tap which came back positive for meningitis. When my husband came into the room, Phoenix’s face lit up… he asked for milk and cookies. He was cheerful and started singing E-I-E-I-O. That was the last time we heard his sweet voice.
A helicopter transported Phoenix to Oakland Children’s Hospital. As we were walking out to get in, the hospital chaplain walked with me. We stopped to pray for a miracle. It was at that moment I knew my baby was dying.
After a 50 minute ride to the hospital, Phoenix’s tiny body was covered in purple splotches called petechiae. He was raced to the ICU. I was asked by the head nurse to stay in the waiting room and was told they would brief me on his condition. Those were the longest two hours of my life. When she came back and told me Phoenix was the sickest boy in that hospital, I felt sick to my stomach. I stood there alone and in shock, trying to make sense of all that I was being told.
As soon as my husband arrived with Gryphon, we were taken straight into the ER to make sure that Gryphon didn’t have the same thing as Phoenix. The decision was made to keep Gryphon overnight until we could get a better grasp on what was happening with our baby son. The nurses came in periodically and updated us on Phoenix’s condition. I couldn’t bear being separated from either one of my boys. I was so worn down that I couldn’t possibly process all the information that was being given to me.
At times, I didn’t understand it, or maybe I simply didn’t want to believe it. I cuddled up to Gryphon and tried to fall asleep with him. Around 2:00 A.M. Gryphon started laughing in his sleep, sat up, hugged the air, and said, “I love you.” Little did I know that, at around the same time, Phoenix’s heart had stopped for 15 minutes. I didn’t know it then, but I know now that Phoenix had come to say goodbye to Gryphon.
For the next three days, machines kept Phoenix’s little body alive. They held off until Sunday evening to do the CT scan because he has been in critical condition. It was shocking and horrible; it was hell. The scan confirmed there was no brain activity. Monday came, and the neurologist confirmed that he was, in fact, brain dead. My husband, Bart, and I held Phoenix’ little hands and watched his strong heart slowly die.
Our baby was pronounced dead around 1:00 P.M. on Monday, February 13.
Needless to say, our lives would never be the same. As a mother, I don’t understand how something like this can happen. That “something” being that any child in the United States could die from a vaccine-preventable disease. I am angry and saddened that this disease can take the life a child, and no one seems to care. I cannot bring my precious Phoenix back but I can help spread awareness about this horrible disease and hope that no other parent experiences the grief and pain from losing a child to this deadly infection, which can be prevented with a simple vaccination.