It's weird as I sit here writing this about my son. Eight years ago today around this same time in the day and on the same day, I sat in a church and looking ahead, I was attending my fathers funeral. At the age of sixteen, I thought I had expierence the worst pain possible, until I sat in a church seven years later attending my baby boys funeral.No mother ever says I want to bury my child. Your children are supposed to out live you, so I thought.
Charles Richardson Samuel Fields was born on December 1, 1998 with a rare heart disorder called Shones Complex, at first when he was born they didnt think anything was wrong. I kept hounding the nurse telling her, somethings not right, he shouldnt be bright red. Sammy as we called him, was very bright red from the waist up and was very cold from the waist down.
When he was 12 hours old we finally got a diagnosis, he had a heart defect. So many thoughts came rushing into my head, I had prayed and begged God for a normal baby. I already had two children with medical problems, and I wanted Sammy to be ok, I didn't want anymore heart ache, and I had had enough to last a life time.
At first they diagnosed him with Coarctation of the Aorta, which is narrowing of the aortic valve. They told us that this was easily repaired and usually had no long term effects or problems for the child. Sammy had his first heart surgery at three days old, some hunderd miles away from my arms. He was in a hospital in Seattle and I was still recuperating from a c-section in a hospital in Tacoma.
The first surgery went fine and he came home 18 days later just in time for his first christmas. But in January Sammy started showing signs that he might have something else wrong with him, and on January 21st he was diagnosed with Subaortic Bicuspid Stenosis, which isanother heart problem. They corrected this on January 28th with a angioplasty. He seemed to be doing great, and starting to gain weight until the end of February when hewas sent to the hospital again for what we thought was pneumonia, he was in for two weeks and released on my 23rd birthday February 28th.
Same thing again in March, another hospitalization, but this time they did a little moresearching and found out that he had Mitral Stenois, and when all three are put together "coarctation, subaortic bicuspid stenosis, and mitral stenosis, you come up with the diagnoses of Shones Complex. They did a angioplasty on March 10th to correct the Mitral Stenosis a little until he could gain the weight needed to do a Mitral valve transplant.
Sammy last for about thee weeks after this when he was back in the hospital for the finaltime. On April 5th, 1999 Sammy was amitted for Mitral valve problems. He spent two weeks on the open ward in the cardiac unit. He was NPO for the two weeks, when we finally said either find out why he is asperating or give him a bottle. Sammy had severe reflux which went undiagnosed during his hospital stays.
His regular pediatrician and cardiologist at our home base hospital knew of this, but the hospital in Seattle refused to listen to me. I had suspected he had reflux, and so had the Seattle Hospital but they kept wanting to do reflux studies. Sammy failed the first study and they were going to do surgery to put in a G-Tube and talked about doing the Nissin surgery. When a doctor suggested another PH Study be done to make sure it was reflux. Looking back now, I wish I would have refused that last study, I cant say that it would have saved his life but, it might have prolonged it, so we could help him gain a little weight,so we could go with the final surgery. On April 23rd during our interview with our home town news paper, Sammy went into relasp of some sort, he began to aspirate and since the cardiologist was in the room with us also talking to the news team, he ordered a nurse to put the PH probe.
Sammy was then sent up to the ICU unit and put on a ventilator, he spent his last two andhalf weeks on and off the ventilator. In the evening of May 3rd, I told the nurse that Sammy wasn't looking his usual, and to please get the cardiologist or a doctor to look at him,s he told me "oh mom don't worry, the little guy is fine", I again told her I didn't think he looked right, and I thought he would be on the ventilator again by morning. I also told her if he should change or get worse during the night to please come to the waiting room and get me.
The next morning, they paged me to the ICU, when I walked threw the doors they were trying to venilate him, there were a ton of nurses and doctors all around me and him. The last time I seen him alive is when I was sitting by his bed side at around 1:00, he looked at me scared, and squeezed my pinky and smiled his last smile. I gave him a kiss on the fore head and then turned to the nurse and said I was going to call my family and his father, when I steped out of the ICU I heard code 188 over the speaker, and knew that Sammy had died.
They put me in the doctors private office so I could make my phone calls. I was in there it seemed for about five minutes, but I am guessing since the time of death was 1:50 that is was longer. They came and got me and took me to a private room, and the doctor said "Mrs Fields, we need to discuss what we talked about two weeks ago". We had talked with the doctors two weeks earlier about what should happen if he died, at the time they thought it was absured to be discussing our plans and wishes, but looking back now, I am glad we did, and am glad our family knew of our wishes it made life much easier in planing his funeral.
My world fell apart when he told me Sammy was gone, I kept saying over and over, why didn't they listen, why didn't they listen. For the parents out there with sick children, if ever in the same situation, all I can say to you if you have the chance before something goes wrong. "Fight hard very hard, don't let a nurse tell you that your being over reactive" That is YOUR child, you spent nine months caring that baby under your heart, and you'll spend a life time caring that childs love in your heart. Fight harder than you ever had, I wish I did, maybe my baby boy would be here, but then again maybe it was all in Gods plan, I'll neverknow until the day, I stand at my saviors feet and ask the question of "WHY"
"Sammy remember I love you, for now rest in our saviors arms."
Shones Kids Heart Foundation P.O Box 215 Castle Rock, WA 98611 www.angelfire.com/mo2/shoneskids Phone/Fax 1-360-274-2954