April 27, 2011


He was 5 months old when I began caring for him. He was the first infant I cared for during my career in pediatric home care. Prior to Gary, I cared for mostly older children with brain injuries. Gary had a genetic disorder called SMA (spinal muscular atrophy). SMA causes paralysis of all the muscles in the body including the respiratory muscles. He had type 1 which was the most severe form and most of these children don’t survive past one year of age. Gary was not on a ventilator, nor did he even have a trach. His parent’s opted not to take these extreme measures. He was a DNR. We did feed him through a feeding tube. He was such a beautiful baby. Alert and cognitively intact, he just couldn’t move any of his muscles, not even to smile. His health gradually deteriorated, and he began to have more and more difficulty breathing. He was on a very high percentage of oxygen and we were giving him morphine injections every couple of hours to help ease his respirations. I’ll never forget the way his eyes had this haunted look to them. He would just look at you with these huge blue eyes and it was so painful to watch him struggle to breathe. We were basically watching him suffocate. It was terrible. We did everything we could to keep him as comfortable as possible. Near the end I just knew I couldn’t do it anymore. I had never taken care of a truly sick baby before, much less one who was dying. I felt the family deserved to have a nurse who was more experienced and would be able to provide the support they needed when he finally did pass away. I was scared I’d be too emotional to be of any good to the family. So I called my agency and they took me off the case at my request. The agency staff said they understood. I felt terrible for doing it even though I knew there were other good nurses available to take my place. I felt like I was abandoning Gary and his parents, even though I believed my intentions were in the right place. He died a week later at the age of 7 months. I was devastated. I went to the funeral and was surprised that the family was glad to see me. They took comfort that some of the nurses who cared for Gary came to say goodbye. They hugged me and thanked me for being there. They thanked me for the good care I provided their son.

It wasn’t even a week later that I called my agency back and told them I was ready to start taking care of babies again. I realized how much I was able to help these families and that I had the skills and knowledge to do it. I knew it would be very sad and heartbreaking at times, but I also knew that I wanted to be there for those families to help them. So then I took classes and learned all about the vent and started taking babies on vents. It was scary at first but I’m a quick learner and I loved what I was doing. I learned to get over my fear. Caring for someone in the process of dying is never easy, especially when it’s a child. The grief and pain from the parents and families are always so strong that you can’t help but feel that pain in the air around you. But now I know that I do not need to be scared of this, that I CAN help them, that I WANT to help them and that it’s OK to cry and be sad. I also now know that it’s ok if the family sees the nurse shed a tear. It allows them to visually see and know that their child is truly cared for.