It was Sunday, February 16, 1986. I can't tell you if we went to church that morning or not; we probably did, but for some reason, I think we may not have that day. I don't recall. We had eaten lunch and Rob was watching TV in the living room, while I was cleaning dishes or taking care of some other task in the kitchen. Sarah was down for her nap. Over the previous few weeks, she had gotten progressively weaker, and the effects of the disease were becoming more obvious. I had begun to bargain with God. IF she has to die, please don't let her suffer.
Pompe's Disease can be a slow, difficult death. The disease occurs when a child is born missing the Acid Maltase enzyme...a fancy term that means one of the elements needed to break down glycogen in our food, is missing. It is considered a Glycogen Storage Disorder. So instead of properly breaking food down and absorbing or eliminating it, the glycogen gets stored in the muscle tissues of their bodies. Arm and leg muscles, the muscles used for eating, swallowing, the muscles used for breathing, and their heart muscles all become thickened and fibrous, unable to contract and expand to do their work. As a result, breathing, eating, moving all become very difficult, and eventually impossible. Ultimately, their hearts stop because they can no longer work properly. The picture we were painted by our doctor was not pretty. We did not want to see our Princess go through such a painful, difficult death, so we began to ask God for the other option; a heart arrhythmia. Because of the changes occurring in the heart, some of these children develop abnormal heart rhythms which are fatal, and typically quick and painless. If she had to die, this was how I wanted her to go.
So as Rob relaxed in the living room, and I worked in the kitchen, things seemed as usual. Then I thought I heard a noise from Sarah's room. She could have been awakening from her nap, so I went to peek in on her. As I walked into the room and peered over the edge of her crib, I could tell instantly that something was not right. My "Mom" mode kicked off, and my "Nurse" mode kicked on. I grabbed her and picked her up, realizing that she was not breathing. I commanded Rob to call 911, which threw him into immediate action. "What do I tell them?", he asked. "Tell them a baby has stopped breathing." I placed Sarah gently on her changing table, and gave her mouth to mouth breathing. With my first breath, she gasped! I paused, shocked, looked at her and thought maybe I had been wrong, but then there was no more effort on her part. I began again, breathing and chest compressions; repeating the drill I had rehearsed time after time in training at the hospital. I could hear sirens in the background becoming louder and more certain, and I hoped they would hurry.
It had only been a literal few minutes from the time the 911 call was placed, to the time we had firemen, police, and EMTs flooding our apartment. As soon as an EMT walked into the nursery, I surrendered control to him and left the room. Shock had taken over. I don't know how long they were there and worked on her. I know there was a kind policeman who sat on the couch and just calmly spoke with us. I know Rob or I called our Pediatrician at some point, and that she asked to talk with one of the EMTs. I found out quite awhile later that she had explained the diagnosis to them, and told them not to do heroics.
As they prepared to take her to the ambulance, the policeman inquired if we were going to drive to the hospital, which of course we were. I think in that moment he knew we were in shock and offered to take us there in his squad car. We agreed. We were in no frame of mind to be driving. Neighbors had come out of their homes, or were peering out windows to see what all the commotion was about, and as he escorted us to the car and helped us into the back seat, I couldn't help but wonder if the neighbors thought we had done something horrible to our baby. We were being put into a cop car. At least we weren't handcuffed; that should have said something.
The drive to the hospital was painfully slow. I think he drove slow on purpose; giving the ambulance, and then the hospital personnel, time to do their work before we could arrive. When we got there, we walked through the big emergency room doors and were immediately escorted into a small room off of the main waiting area. I knew this room. I knew what it was for. Training and working in this hospital had given me a working knowledge of the purpose of such places. This is where they put you when your family member is dying, or dead. Not many minutes passed before a young, white-coated man came to the room, and shut the door. He spoke the words we had never wanted to hear; our baby girl was dead.