We look at the pictures and cling to the memories. The giggling green eyed with red hair boy wrapped in a bundle of joy. The day he came home what a day that joyous day did bring. The family all gathered streamers and presents and food. So many diapers and changes of clothes now all unused and gathering dust as we can barely walk into a room that use to bring us such joy not brings us to our knees. The long 9 month wait, and we ran all the test told everything was to be just fine, how we to know, how were we to prepare? Tragity hit just all sudden his eyes roll up and he shakes but it doesn’t last more than a few seconds. A few seconds later he sounded like he was crying but the sound and pitch was all over the place as well as him shaking. I tried to sooth him and so did my husband and then we realized he was tense and this wasn’t right we called 911. The longest call and ride I have ever had.
What could ether of us do but wait for the doctors to do what doctors did best. Treat our son. We waited in the waiting room full of hope and not of any patience. Finally we were told we could go see our bundle of joy. What shocked us as we ran back to see him wasn’t seeing him but the wires attached and how suddenly he slept till all sudden another struck. How helpless we were and to us the doctors just it was a few needs and looking at a computer. So upset we were, how could u just barely do anything, do more your payed so much so help our boy. We demanded they did more, so enraged they seemed to do so little, to what we saw. Little did we realize not much can be done to such a small body, a frail young newborn. The doctors where doing all they could, they had ran all the blood work and pushing what meds they could and watching all the brain waves they could but not much more they can. I watched in horror as the last one hit and the last smile my son smiled before his last breath. I held my wife close and we both sat crying wondering if there could have been anything we could have done, to save out 2 week old son. Doctors and nurses helped us thru the process and we now have a better understanding. SUDEP is harsh its real and it can hit anytime and anyone. Going forward now we have had to ask for help and get good counseling because loosing isn’t easy. Its been 6 years and we are now expect our 2nd child its been a long hard road but we are fully aware there is a world beyond our front door. There is medical reasons and answers. There is more than what meets the eye, and seizures can hit about 1-26 people in their lifetime even children who have barely been around long.
- HOW TO TELL IF YOUR INFANT IS HAVING SEIZURES!!!!!
The baby may have jerking or stiffening of a leg or an arm that can alternate from side to side.
Or the whole upper body may suddenly jerk forward. Or both legs may jerk up toward the belly with the knees bent.
The baby’s facial expression, breathing, and heart rate may change.
Impairment of responsiveness (which is critical in defining many types of seizures) is difficult to assess in newborns. Parents may suspect that responsiveness is impaired when their voices are unable to attract the newborn’s attention.
Hiding in the Shadows 