Benjamin’s Story

As told by her mother, Tina

On Friday, September 13, 2013, my full-term son, Benjamin, was born. He was a beautiful baby boy, 7lbs 13oz., 21 inches long with ten fingers and ten toes. He looked just like me. At about 30 hours into labor my epidural needed to be replaced, and after doing so, Benjamin was delivered within a half hour via emergency c-section due to a major drop in his heart rate caused by unknown reasons. He was born with no vitals and an APGAR score of 1. He was resuscitated and his heart rate started back up fairly quickly but it took about 10 minutes before he took his first breath. Needless to say, the damage caused by the resuscitation and the delay in time that it took for his lungs to start up caused Benjamin to be a NICU patient for the next three days. Due to his extremely critical condition, on Monday, September 16, 2013, we were informed by the NICU staff that they had finally run out of options and it was time to be with our son as he transformed into an angel.

Shortly after, Benjamin was placed in my arms for the first time and a NICU nurse informed us that he was a candidate to donate his two heart valves. Without much hesitation, my reaction was “HOW COOL!” I was crying and smiling all at the same time. I will never forget holding this beautiful, strong baby, feeling so much pride that our son had fought, and fought hard, and now he would be a hero as well. We had no idea just how special Benjamin’s gift would be.
I was informed that I would be contacted via telephone by our organ procurement organization, Sierra Donor Services, so that they could go through a somewhat lengthy medical history questionnaire. I was called later that evening. It took approximately half hour to 45 minutes. A couple of days later, I was contacted by a member of the donation organization, informing me that I would be required to obtain a very specific blood test in order for the heart valves to be donated. This had to be done in a very quick fashion since we had also agreed to have an autopsy performed, and because of our decision to donation, the heart would have to be inspected while still at the hospital in order for the heart valves to be removed prior to his body being sent off for the in-depth autopsy. After being provided some confusing information related to where I would have the blood test performed, I was unable to provide the sample at the establishment that I was referred to. I was very nervous that I would somehow miss the deadline and the heart valves would not be able to be used. The organization worked with me and sent a member of their staff to my home. I thought this to be somewhat unusual at first but when he showed up, it all made sense.

The lab technician explained to us that these tiny heart valves are literally “more precious than gold.” He explained that he would have driven hours to get to me, if need be, to make this work because these little gifts WILL save lives. He described the process to us and explained that the valves could be stored for a couple of years, and once they were used, another baby would be able to live. I cried. We thanked him because the effort, information and compassion he provided us made it all so worth it.

Losing our child is something that we will never, ever forget. He will always be the missing family member and I don’t expect the pain to ever fully go away. With that being said, we are still so very proud that we were able to be the parents of an infant donor. We were informed that not many parents/families donate infant organs or tissue because the death is usually such a shock that it is difficult to absorb the situation, let alone add in the major decision of whether to have your baby’s organs or tissue removed and donated. I am so glad that this was an easy decision for us at the scariest and saddest time of our lives. It just made sense. If our baby could possibly help another family from having to suffer such a loss, then we were happy and honored to help.

He was with us for such a short time but we feel so blessed to have had that time with him. Our Benjamin is SUCH a special boy, and even though we will most likely never know who receives his gifts, just knowing that other babies and their families may be protected from some of the heartache we endured is a blessing in itself.