God's Will Not Mine
The day after my birthday, I decided to go through Coen’s chifforobe. Since he is six years old now, it was time to give him some independence. While going through it, I came across the folder we received from the hospital when he was born. I read over the paperwork, and it brought tears to my eyes. My only child here on earth is no longer a baby. After looking at all the information in the folder, I closed it and saw another Lafayette General folder underneath.
It was my discharge paperwork from Cayse. My heart sank! I had never reviewed it. I started flipping through the paperwork, and it said that I was discharged to go home without a baby. The funeral home was notified to pick up the deceased baby. I hurried up and closed the folder because I couldn't read anymore. Seeing “discharged to go home without a baby” was so crushing. It felt like I was leaving the hospital all over again empty-handed. Once I had the strength to go on, I started flipping through the rest of the paperwork.
The next set of paperwork was information from LOPA (Louisiana Organ Procurement Agency). This is a very special agency that we were working with. We wanted to donate Cayse’s organs to LOPA to help with research since his organs were too small to donate to a child. When we started the paperwork before the delivery, they said they needed a heart, kidney, and spleen. Unfortunately, though, we were not able to donate his organs to LOPA due to my traumatic delivery. We were crushed when we found out. We really wanted to support further research to hopefully help another family who was given the diagnosis of Anencephaly.
Anencephaly is a serious birth defect in which a baby is born without parts of the brain and skull. It is a type of neural tube defect (NTD). As the neural tube forms and closes, it helps form the baby's brain and skull (upper part of the neural tube), spinal cord, and back bones (lower part of the neural tube). So many doctors still don’t know why it happens and what could be done to prevent it.
A few months after Cayse died, I contacted my friend Laura who works for LOPA, and we met for lunch. During our lunch visit, I asked her, “Did y’all really try to recover his organs?”
The next thing she said brought tears to my eyes. “Ashley, I had his heart pumping in my hands when Virginia called and said they could not take his organs due to the flight time. By the time his organs arrived, it would have been 10 hours since he had passed.” Once a baby is declared brain dead, there are three hours for recovery of the organs. Due to my traumatic delivery, the time had lapsed.
I am still a little upset that we could not donate his organs for research. My husband struggled with our son's diagnosis, and when I told him about neonatal donation and what they do, he was on board with me going on with the pregnancy as much as we could. He said if the one thing we could do for our son was to help someone else not go through what we are going through, then it was worth the try. Nevertheless, I believe there is a reason why were not able to share Cayse’s organs. I may never know the answer, but I do know one thing: Neonatal donation is worth it to help another family. I would try again in a heartbeat to help discover why anencephaly keeps happening. My baby boy’s purpose may not have been to help with research, but I know God is using him as part of a bigger plan for me in the future.
