I told myself I never wanted to remember this day. I wanted to only commemorate positive dates in Gwendolyn's life. Yet, somehow, this day has managed to cement itself in my brain. This day last year forever changed my life — FOREVER! I was actually making a video of Gwendolyn before I received the call from her neurologist. It is hard for me to watch now, but important for me to see — it instantly takes me back to the upheaval of that day, but it also reminds me of the hope I once had.
I knew SMA was a possibility, but I wanted so much to believe the misdiagnosis of Infant Botulism (IB) was accurate that I couldn't really bring myself to deal with the idea that it wasn't. Gwendolyn was only 9 weeks old when she was first hospitalized and she improved, so IB seemed logical and our neurologist had never seen a baby with SMA, who was previously thriving, just suddenly crash the way Gwendolyn did. We were in the hospital for a month and her progress was slow, but it was headed in the right direction. She saw multiple doctors while there and so we felt we were getting several opinions about her illness. After our release, for the next two months I saw doctors three times a week, then two, then once a week. We checked in on the good and the bad. There were positive signs – she started breastfeeding again, but some warning signs — her leg movement did not change much. Even though I was desperately clinging to the IB diagnosis, I was always honest and reported on every single thing Bill and I noticed. Up to this point, we thought the only way to diagnose SMA was through a muscle biopsy. Both the doctors and Bill and I agreed that because it did not seem like SMA, why put a baby who is improving through such an ordeal. I am so glad we didn't do that, it seems archaic and is subjective. But, had we known there was a simple blood test, we would have done it sooner. After three months of moderate improvement, our pediatrician learned of the blood test and we had it done that week. I remember we got together with some friends a few days later and I casually mentioned this test and they all seemed shocked. But, I, on the other hand, was so sure that everything was going to be okay. I convinced myself that we were unbelievably fortunate and that our scare would some day be just a story I told Gwendolyn about her babyhood. She was a very sick child, but she was expected to make a complete recovery. She was expected to walk, to play, to breathe, to eat, and to LIVE!!! I could not bare to not believe this.
I remember a few days before the dreaded call (it took four weeks to get the results back), Bill suddenly said, I think it is SMA. I remember feeling angry with him for saying that, as if he were jinxing us, but that one comment forced me to begin opening my mind to the possibility it was not Infant Botulism. When the neurologist called he didn't have to say much, his tone let me know my world had forever changed. I went cold and asked a few short questions: How much time does she have? Is there anything we can do? and then politely thanked him for his help and hung up the phone. I was shaking now and Gwendolyn was looking at me with a puzzled expression. I called Bill and said, Come home. He never asked why. He knew.
At some point I was angry about the misdiagnosis. Those three months of not receiving breathing support, no BiPAP or respiratory treatments, could have killed Gwendolyn. But, if I am angry at the doctor's error, I have to be as angry with myself because in the age of Google, I could have learned more, pushed for more testing, gotten a second opinion. But, I was still spreading my parenting wings. We were never negligent with relaying information, with asking questions, with attempting to gather scenarios, but we did not insist on more. I have since grown confident that we know our daughter best. And, we have learned how to fight for her. But, in all honesty, I dread the next time we have to.
Watching this video makes me so wish I could rewind, go back to the morning of that day, go back to a time when I thought my baby would have a future. But, it also makes me smile — her sweet sounds and baby grins are irresistible.