His story: Mikey came into my life 4 years ago, when I met his daddy, and came to live with us 3 years ago, when I married his daddy. Mikey was born with a hereditary heart disease, the heart was growing faster than normal. The septum between the chambers was thickened, and the ventricles were enlarged. We were told from the start that sudden death would always be a possibility, but never thought it would really happen. He was otherwise perfectly happy and healthy. He had palpatations seldom, but other than that there was no evidence in his life that he carried this disease. His doctors were shocked when they were informed of his untimely death. He went to school that morning just as any other morning, after having his favorite, french toast, I walked him out to the porch, and as he walked down the steps said "have a wonderful day", and he turned around and looked at me with a big smile "I wheel". I never saw him again. Around 11:30 a.m. I received a call from the school, Mikey is sick, you need to meet us at the hospital. The person on the other end seemed very calm, but, somehow it didn't seem right. When I got to the hospital, the chaplin met me at the door. I asked why? He assured me that they always call the chaplin when there is a school accident. For about an hour, they kept asking me questions... how can we contact your husband... questions about his disease... I assured them that it was probably nothing... but they weren't telling me anything... I would be able to see him as soon as the doctor was ready for me... I was unnaturally calm, I really was not ready to be told my son was dead... how can we contact your husband.... you can't! I don't know where he is! He is working somewhere in Princeton on a house that a man drove through! I don't know! They ended up tracking my husband down from the police report from the accident where a man ran into a house in Princeton. They told him to get to Bluefield ER immediately. By the time he got there, they had told me Mikey was gone, I screamed NO! you have the wrong kid! Mikey is not sick! I went to see him. He was so still, he still had the tracheal tubes in him. I held his hand, I cried, I said I am sorry... He was so alive that morning, it was impossible to think he could really be gone!
Mikey's grandfather died from the disease at age 31. His natural mother Has had congestive heart failure 5 times. He has a 3 year-old half sister. They have said she has the disease, but mildly. There are many means of intervention for the disease, but Mikey was never considered for any of them. He simply took medication every day, and saw the cardiologist once a year. When I asked the doctors, how do I as his caregiver, take care of him with this disease, I was simply told if his heartbeat is so fast you can't count it, get him to the ER immediately.
I was in the process of researching the disease for myself when he died. I felt that the doctors were not telling us everything that we as his day to day caregiver's needed to know. I know a lot more about the disease now,more than I ever did before. Had I been more aware then, we would have pushed harder for something to be done. There are procedures that can be done,although none are a cure for the disease, they can prevent death such as this.
At the time of his heart attack he was swinging on the playground. His teacher says he was happy and swinging and smiling, then he slumped off the swing. She administered CPR, 911 was immediately called, drugs were administered in the ambulance, but by the time he arrived at the ER, he had no pulse. He was gone that quick. I feel that the school, the EMS Tech's and the ER did everything they could have done for our son, but, did the doctors whose care he was under do everything that they could have done for him? Should he have been placed on a halter monitor? Should he have had a pacemaker? Or the surgery to cut away the septum which was enlarged? Perhaps even a heart transplant? His current cardiologist told us that his heart was twice as big as my husbands. If his heart was that big, pounding in that little chest, why would nothing have been done for him? We cannot help but wonder, if ... Mikey didn't have medical insurance. Due to his heart disease, he was not insurable. Coincidentally, he was approved for medicaid the day before he died. Could that have been the reason he did not receive life saving treatment? That is the question that we need answered now.
