Sunday March 7th, 1999 – Day of the Event
Those who follow my blog know of my interest in and advocacy for those impacted by autism, ASD and other conditions that require medical and, or therapeutic intervention. Our daughter was diagnosed with a mild form of epilepsy at about age 12-13. She had her checkups, took medication and as far as we knew was living a reasonably normal life. All that changed suddenly one Sunday afternoon. It is a day I will never forget. We are approaching another anniversary of the day that changed our life forever. It is my hope and sincere wish that anyone who has epilepsy; is the parent of someone with epilepsy or a friend of a person with epilepsy, that you read and consider the story I’m sharing. Maybe you can save a life. With these opening words, I’ll begin my story.
The day began like most any other. Our family was at home and enjoying a relaxed Sunday afternoon. Something changed that day starting around 2 p.m. that has haunted my life ever since. At about that time we found our youngest daughter, Amy lying on the floor. Her arms were resting between her elbows and forearms. She looked up, and with a confused look moved her head from side to side, trying to shake off the confusion. We asked how she felt. She just said, “I’m ok now?”
The past few weeks had been rather frantic. Amy was making preparations to be married in May. Purchases had been arranged and a chapel reserved for the highly anticipated event. For all we knew the added stress of these arrangements along with her recent promotion to management with her employer had brought on fatigue. We all have days like that.
Amy had a history of absence or petit mal seizures going back five or six years; so we asked if she had missed her medications. There had been the usual symptoms of absence or petit mal seizures – staring blankly and some blinking. If her friends or co-workers had noticed changes we never knew. We asked her about her medications; we never received a clear answer to the question. When asked whether she wanted to see a doctor to make sure she was O.K. she declined. We should have insisted otherwise and gotten treatment for her, but we did not.
About two hours later, approximately 4 p.m., one of our other daughters became concerned because Amy had been too quiet. She called out to Amy and got no response. The shock began when we found Amy on the floor, again. This time she was unconscious and in respiratory arrest. A guest in our home started CPR while I made a frantic call to 911. Paramedics arrived promptly, we live only a few blocks from the station, but the time felt like an eternity. Paramedics did what they could and rushed her to the nearest emergency room. We followed shortly behind the ambulance and arrived at the emergency entrance. Then the wait began.
Next, we were told the prognosis wasn’t good. Amy was airlifted to a critical care hospital specializing in acute neurologic emergencies. The saga had begun. To say we were emotionally traumatized would be an understatement. After several hours in the emergency room Amy was transferred to ICU where she stayed for a week or so. During this time neurosurgeons conducted a host of tests; from brain scans, to MRIs.
And, we waited. Amy had many friends. They visited along with those from our local congregation. All this helped but we were in a state of emotional shock. Thoughts ranged from helplessness to hope, despair followed by renewed determination. Doctors offered little hope for recovery. We believed that, “where there is life, there is hope”. After about three weeks a hospital social worker advised us they could not treat Amy any longer. When asked about available options, the hospital social worker provided a list of rehabilitation facilities. We chose a facility closer to home and awaited the transfer to the new facility. Amy had been comatose this entire time.
At the new rehab center Amy received excellent treatment. We reached out for hope and at times felt she might be responding to words of encouragement. To us, there seemed to be positive responses; hands lifted, eyelids fluttered…and subtle changes in expression buoyed our hope. Family and friends took turns in the vigil and the days went on and on. Almost three weeks after arriving at the rehab center doctors and the physical therapist met with us to show us how to help with Amy’s therapy – at home. They could keep her no longer. The very thought of this traumatized us again, but we reluctantly accepted the only remaining option.
At around 5:30 a.m. the next morning that option was taken off the table. Her neurosurgeon called to announce that Amy had passed. Our hopes for recovery dashed; the worst of our fears realized. Thursday April 29, 1999 will be burned into my mind to my dying day, but life must go on.
Do we have regrets, you bet. Looking back on that day, March 7 when our lives took an inescapable turn, we can see that lack of action on our part may have cost Amy her life. The thought had occurred to us that we should have taken the initiative and rushed her to emergency for diagnosis and treatment. That inaction proved to be a fatal mistake. To our credit the warnings now given to patients, parents and friends of those with a risk of seizures did not exist. I wish we had been warned but that cannot be changed.
I can’t undo the mistakes of the past. What I hope to do is get the attention of those at risk and their care givers. When in doubt, act. Do not repeat my mistake. If given a chance, don’t over think. Make a plan of action and if the patient’s behavior warrants, act on that plan. You might very well save the life of your precious loved one. Yes I have regrets, you bet. Please spare yourself the pain that might follow.
Help is out there. If you don’t know how to handle the condition learn. Visit the professionals and volunteers that can provide the knowledge. You have nothing to lose and everything to gain.
Wishing the best to you and your loved one,
Parent of a lost child