Guest post by Clare
It has taken me several weeks 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.
I have always thought this saying to be true, “An ounce of prevention is worth a pound of cure.” Therefore, on the one-month anniversary of Phoenix’s death, the time has come to tell his story.
Phoenix is my beautiful, intelligent and amazing son. I want every parent to know that he was a precious child who was loved, cherished and cared for by his parents and his twin brother. 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. He played with his brother, ate his breakfast, and then played some more. After eating lunch he laid down for his nap and around 2:00 P.M. woke up with vomiting and with 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. After getting Phoenix all cleaned up and settled down, I decided to check his temperature again. When I saw that it was now 104 degrees, I strapped him in the car and headed to the emergency room. As we arrived at the ER, I noticed a small spot on his arm. I couldn’t linger on this thought because things started moving pretty fast with the doctors and nurses checking his vital signs and asking me a lot of questions. I couldn’t keep my eyes off of Phoenix. I started to realize he was now acting very strange; it was like he was hallucinating. He seemed at peace and started to sing to me.
Nobody, not even the doctor, recognized his symptoms. The hospital staff had decided to just keep an eye on him and monitor his temperature.Phoenix asked me to take him to the bathroom, and while he was sitting on the toilet, he kept losing his balance and falling off. Immediately I knew something was wrong, so I started screaming for help. Several nurses came into the room, and at this time, the doctor decided to do a spinal tap. Even though it is such a painful procedure, my precious Phoenix didn’t move at all.
The doctor and staff called for the helicopter to transport him to Oakland Children’s Hospital. In the meantime, the results came back positive for meningitis. When my husband came into the room, Phoenix’s face lit up and he asked his baba for milk and cookies. He appeared to be responsive and cheerful and started to sing E-I-E-I-O. The anesthesiologist suggested we put him under to help eliminate any pain that he may be feeling. That was the last time we heard his sweet voice.
When the helicopter arrived, I demanded to be transported with him. 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 helicopter ride, we arrived at the hospital. While they were getting him out, I could see that his tiny body was covered in purple splotches called petechiae; his legs, his arms, and his torso .Phoenix was raced to the ICU. Coming into the room, I could see at least four doctors and ten nurses scrubbed in and ready to go. 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. My husband had not yet made it to the hospital, so 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 Phoenix’s twin brother, 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 under observation for the night 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 kep tPhoenix’s little body alive. Then, we received the most devastating news we hoped never to hear: “Your son, at this moment, is the sickest boy in the whole world.” Phoenix was hooked up to countless IVs, lines, and machines, at least 15, going into his little body at one time. They also had him on an ECMO machine that was inserted into his arteries to help oxygenate the blood. He was so unstable to move that they could not do a CT scan on his brain because his heart had stopped, and his temperature had reached 106 degrees. They held off until Sunday evening to do the CT scans. From Friday to Sunday evening, we heard from the doctors, “Your son possibly has severe brain damage due to his high fevers, he has pneumonia, looks like we will have to amputate some toes and fingers, looks like we will have to amputate all four limbs.” It was shocking and horrible; it was hell. On Sunday evening, they were finally able to move him and did a CT scan. The scan confirmed there was no brain activity. Monday came, and the neurologist confirmed that he was, in fact, brain dead. Throughout this extremely long weekend, the chaplain of the hospital stayed close with us. Sister Breanice was an absolute saint, and through her words and kindness helped Bart and I become at peace with where Phoenix was about to go. She was right there as we watched the surgeon take the ECMO out of his body, and she was right there as Bart and I held his little hands and watched his strong heart slowly die. Our baby was pronounced dead around 1:00 P.M. on Monday, February 13.
Please pardon my anger and sadness when I express how devastating it was to read the article regarding Phoenix in the local newspapers, a simply put story regarding a nameless three year old who had contracted the meningococcal disease. There was no follow up to his condition, no call to action for parents to talk to their healthcare professionals, not even a note on what symptoms parents should look for in their own children. No one knows where Phoenix contracted this disease. What I know, after doing my own research, is that this disease is only carried by humans and is passed along in close contact situations: crowded areas, high schools, dormitories and even preschools! I also know that this disease has a high fatality rate in children and adolescents, and many who are lucky enough to survive usually don’t escape its devastation without the loss of a limb, some form of brain damage, hearing loss, or kidney failure . As a mother, I don’t understand how something like this can happen. That “something” being that any child in theUnited States could die from a disease that currently can be prevented by a vaccine. That is right: there are vaccines that help prevent the spread of disease and pointless deaths.
I am sure many of you have heard of polio, measles, mumps, and rubella, and how our society has done its best to eradicate these dangerous diseases. Every child that is born is required to get vaccinated at some point, and I am a parent who says, “That is great!” Why should our children die from a disease that can be prevented? How often do we hear of an outbreak of polio? Not often, or really ever. Thanks to vaccines.
I understand that there are many families who choose not to vaccinate. I respect your right to choose. However, I do vaccinate my children and expect to be given all of the necessary information to make an informed decision. Herein lies the problem: I was never made aware of the vaccinations available for meningitis. It is hard to believe that we currently have vaccines which protect against types A,C,Y and W135. One of the vaccines is approved for use in children as young as nine months of age. There are five different strains of bacteria that can cause meningococcal disease, and we can currently vaccinate against four of the five. The vaccine is offered to teenagers, college students, military personnel and other selected groups. Although this disease is known to have a high mortality rate in young children, for some reason, this is the age group not offered the vaccine.
I am lost. No, I am more than lost. I am angry and saddened that this disease can take the life a child, and no one seems to care. Why aren’t the younger children protected with a vaccine recommendation? Without any kind of public outcry, pleas of parents who have lost their most valuable treasures are going unheard. Our government needs to help protect our children and change the way our medical system works. Something has to be done but won’t be until we raise our voices loud enough to be heard. I didn’t want to be an advocate. I would much rather be holding my precious son in my arms, watching him play with his brother, tucking him in at night. I have to say that without the love and support from our friends and family, I am not sure my husband and I would have gotten through this. So, I must ask you, from one parent to another: wasn’tPhoenix’s life worth that ounce of prevention?