Little Marshall

by Laurie Potter

From the minute I learned that I was going to be a mother, I knew that I would breastfeed my child. I wanted that special bond with my child and I knew that no bottle could encourage that type of bond, between my baby and me. And so, the day arrived when I became a mother. My son was born 12 days early. The labor and delivery were far easier than I had ever expected. I did have some problems with bleeding, but once that was under control I was finally able to feed my baby. The nurse was helpful placing him there, but my son, Marshall, did all the work. He latched right on and stayed there until he fell asleep. I kept thinking to myself "This is too easy!" I was right. It was too easy, and my life was about to get much more difficult.

When Marshall was four weeks old, I noticed that he had stopped moving and the noises he made seemed to be getting quieter. We could hardly hear him cry. He seemed very weak. His pediatrician became concerned with his lack of movement and the now absent reflexes. We contacted Early Intervention and made an appointment with a neurologist. I continued to breastfeed Marshall and he gained weight well. I was very nervous about the reason he had stopped moving. I never had a good feeling about it from the beginning. After weeks of worry and many tests were completed, we were given a diagnosis. Spinal Muscular Atrophy, Type I. Those words meant nothing to me, as I had never heard of it, so I asked the doctor what kind of a cure there was. His answer made all of my dreams come crashing down. He said simply "There is none". He told us that our baby would probably never live to see his first birthday. SMA is a genetic progressive neuromuscular disease that causes paralysis, loss of swallowing ability, difficulty breathing, and ultimately death.

We were shocked and devastated. We decided that we would take Marshall home and keep him comfortable for as long as he remained with us. I continued to nurse him. It was the one thing that was comforting to both of us. As time went on, Marshall got weaker and more uncomfortable. His ability to swallow began to vanish quickly. He could no longer feed at the breast. I began experimenting with every bottle nipple I could get my hands onto. I still refused to give Marshall any formula at all, and for a few weeks, I could pump for his bottles and he would eat that way. As time went on, I realized that he was no longer swallowing efficiently and choking became a frequent occurrence. We decided that we had better get him a g-tube, so that he would not starve to death. He came through the surgery fine. I continued to pump for him, and instead of putting it into bottles, we emptied it into the tube that fed it directly into his little tummy. I still did not want to give my baby any formula. Children with SMA have extremely fragile respiratory systems and I knew that if Marshall got a cold, it would turn into pneumonia and it would spell disaster for him. My baby's life depended on breast milk. He needed the antibodies to stay healthy.

Marshall lived for one more month, after getting the feeding tube placed. I am happy to say that he never got a single cold, and never became ill even one time. He died simply because the disease he had weakened his muscles to the point that they were no longer strong enough to breathe for him. Marshall was four months and six days old when he passed away. I truly believe his time with us was comfortable and enjoyable because he reaped the benefits of breastmilk every day of his short life. I will definitely breastfeed all of my future children, if I should be so fortunate to have more. Please learn more about Spinal Muscular Atrophy by visiting www.fsma.org

Learn more about Marshall and his story by visiting www.marshallpotter.com