As parents we always try protect our children. When the day comes, out of the blue, what happens when there is nothing you can do to protect your child's life?
On June 20, 1995, 1 found out the hard way. My daughter, Stacey, died at the age of 15 years old. She was healthy all of her life. Stacey was a gymnast for several years, always athletic and full of life. That life has now been taken away.
One day at the end of May, Stacey's alarm went off for school. She felt really funny so she ran out of her room to find me. She then blacked out and fell face down on the tile floor in the hallway.
We rushed her to the emergency room; she had broken several teeth and her jaw. They kept her for observation and wired her jaw. A neurologist was brought in for testing and consultation, and I was told she was having seizures. During jaw surgery, the anesthesiologist saw an irregular heart beat and a pediatric cardiologist was called in.
So now I have a neurologist who is telling me it is seizures and a cardiologist doing tests to see if it is the heart. I asked for a second opinion on the neurology, and was told her EEG was fine for a 15-year-old, and I should follow up with the cardiologist, which I did.
The following Monday I went to the hospital to gather all her records for a second and third opinions. MY cellular phone rang. It was my husband. Something was terribly wrong with Stacey. The 911 emergency team was there and they were on their way to the hospital.
It seemed to be an eternity waiting for the ambulance to get to the emergency room, I felt everything drain from me. All these questions were going through my head ... What was wrong? Why was this happening? Why did they release her a week before if something was so wrong? The ambulance finally arrived. Stacey had no vital signs!!! With all my family around, wondering, praying, crying, we could not help but think what went wrong.
Forty five minutes later, the doctor told us they got her back. She was very critical, but they were bringing her to ICU. Because it took them so long to get her back, the gas levels were quite high. We were told if she did survive she probably would have brain damage, because it went without oxygen for so long, one of your children trying to hold on to life and there is nothing you can do to help.
The nurses recommended we get another pediatric cardiologist in and one was called. Within a short time the doctor just looked at Stacey's chart and told us she suspected Stacey had a rare heart disorder called Long Q T Syndrome, and she would have to be transported to another hospital where they had the facilities to take care of her.
At that moment, I looked down at Stacey's chart and saw her EKG from her jaw surgery the week before. I noticed in the original doctor's handwriting, "prolonged QT interval" and asked when this was written --and if it was on the EKG from the beginning.
I was never told about this from the original cardiologist, never told of the danger, never was my daughter given medication to protect her life.
Stacey was taken to another facility despite several more episodes, she was stabilized. They explained to us that this disorder affects the electrical system of the heart, but the heart was fine.
The following day, a surgeon came and they removed her sympathetic nerve. They told us it was a procedure which is not normally done. It could be dangerous and they have to be sure they took the right nerve. They did and our hopes were getting higher. Within the next few days, the halls off the hospital were lined with her high school friends, her brother's friends, our friends, and our family. Then the time came, she was not reacting to any of the neurological exams. We were told that they would be doing tests on Stacey to see if there was any brain activity.
We were approached by the donor program. A lot of people would have been very upset with them, at this most difficult time.
We knew Stacey would want to help someone else. I felt that we would be keeping part of Stacey alive through someone else and saving someone else s life in the process.
I wish I knew how the three recipients of her organs are doing. I often wonder if they are doing well. Through my daughter, they received the gift of life.