I was due with my first child in September 2009. During my prenatal appointments my husband and I noticed that the baby’s heart rate was always at the high end of what the doctor considered “normal”, but it was our first baby so we trusted the medical staff that said everything was okay. At about 35 weeks along I went to the hospital because I had not felt the baby move much for a few days. They admitted me overnight for observation and hooked me up to the fetal heart rate monitor. There was concern at that point because the lines on the tape were very straight and consistent. They did an ultrasound at the hospital but still could not say that anything was wrong. I was sent home and put on bed rest. Later that week I went to the doctor’s office for a follow up ultrasound. The tech at the doctor’s office said the baby’s heart looked enlarged and they were sending me to a bigger hospital for a level two ultrasound. I was getting very scared very quickly. I arrived at the specialist’s office at the larger hospital hopeful that things were still okay. The level two ultrasound revealed that one side of my baby’s heart was barely pumping. I called my husband and my parents in tears and shaking. My family came to the hospital immediately and I was sent over to the labor and delivery unit at the hospital where they did an emergency cesarean section. The baby was a boy who we named Carson Alan. He had to be resuscitated at birth and whisked off to the NICU to be evaluated. I barely caught a glimpse of him in the surgery suite. After they settled me in my hospital room, reality started to set in. Carson was diagnosed with an idiopathic dilated cardiomyopathy. I visited him in the NICU as much as possible and was even allowed to hold him once. The medical staff told us he probably only had 24-48 hours to live, but after four days at that hospital, he was med-flighted to a children’s hospital for additional help and support. He was a tough little fighter who beat the odds! The doctors tried to run tests to see what caused his heart to have problems and could find nothing. The best explanation we ever got was a “fluke” problem occurred when his heart was developing in utero. He had several procedures, different drugs and different therapies but nothing was improving his condition. Carson was put on a heart transplant list, but as the days went on, his other major organs started failing. His lungs, kidneys, and heart were all shutting down. He was removed from the transplant list due to his worsening condition. After 28 days of fighting, one of the doctors looked me in the eye and said “he is dying; you need to let him go”. At that point, my husband and I broke down. Our little baby boy looked sick and tired and we did not want to see him suffer. We gave the medical team permission to remove the breathing tube and all external life support systems. We held our son without machines hooked up to him for the first time since his birth. We held him, we talked to him, we cried and he went to fly with the angels. He was not suffering any longer. After he passed, we bathed him and dressed him in his “take home” outfit. We went home empty, numb, and childless. We had a small family memorial service for our son and took his ashes home in a small urn made for children. After that there were several months and years of healing and recovery. The biggest question on our minds was still how did he get this condition? The other question weighing on us was: what could we have done differently? Sadly, we never got answers to those questions.
Since then we have been blessed with two amazing and healthy daughters, Kayla Jo and Novie Grace. They were both treated as high risk pregnancies and monitored very closely. We continue to get them monitored by the pediatric cardiologist just to be safe. Our son will always be our first baby and we will always carry him in our hearts. It is amazing how much one little person could touch your life in ways you never thought possible. He taught us about love, strength, hope, and courage. I am so blessed to have had this little person be a part of my family. Even years later, I still think of him every single day and miss him. You always wonder…what would he look like? What would he like to do? Who would he take after? Unfortunately we will never know but we can only speculate he would look like his adorable younger sisters. Miss you Carson Alan, forever and always!