When My Daughter's Doctor Said, 'You Mentioned SMA’
Jeff and I packed up our daughter Blake, left her sister Kenley with my sister and headed to Seattle for our neurology visit. I had been nervous for every single appointment so far, but this one caused a special amount of anxiety. I was on the verge of vomiting the whole way there. It’s like I somehow knew.
We didn’t have to wait too long to be called back and put in an exam room. The doctor came in and was followed by another doctor he introduced as a Fellow. He told us the Fellow was in training and would be performing the exam. I can’t even remember the guy’s name, that’s how nervous I was. Right away he was asking questions we hadn’t been asked before. Let me tell you — we have answered a ton of questions over all the visits we’ve had. One quickly stuck out: “Since Blake is your second child, do you feel like she moved less in utero than your other daughter?” No one had asked me that, so I had to stop and really think. My answer was, “Maybe. I guess a little less.” I looked over at Jeff and he immediately added, “Definitely. She talked about Blake being less active a lot.” It felt strange I didn’t really remember that, or maybe I somehow didn’t want to remember that. The questions continued for 10 more minutes. During the explanation of what services we were receiving, we brought up spinal muscular atrophy (SMA) being suspected by a physical therapist, but never said to us directly. The doctor nodded, moved on, and so did we.
I held Blakey as the doctor began her exam. She kept smiling at him and being super cute, like she always is. Her eyes tracked his light. He looked in her ears. Then he moved to her mouth. As he shined the light into her mouth, he asked us if we had noticed her tongue quivering. During my own research, I watched a video on YouTube of a child who had what is called tongue fasciculations, or a tongue quiver. I told him no and Jeff agreed. I asked if he saw one. His body language said a lot, but he quietly said, “I see it a little bit.” He looked over at the attending doctor who nodded in agreement. My eyes started to well up. Then, he pulled out a reflex hammer and started tapping on Blake. Nothing was happening and he could see I was upset. He assured us that reflexes are difficult to get on babies for a variety of reasons. I saw no response on her left leg and then her right. I looked him right in the eye, “You aren’t getting anything are you?” He waited and then said, “I have to say at this time no I am not.” I couldn’t hold back the tears at that point. I felt them roll off my cheeks and onto my baby’s little head. Jeff took her over to the exam table and they did a few more things. He stood by her so she kept smiling. They finished and told us they would be right back and left. Just like that, they left the room without saying anything else. I remember bawling and telling Jeff I knew it was really, really bad. My husband doesn’t like to show he’s upset while I’m upset; but I could tell he felt it, too.
About five minutes passed and Blake had fallen asleep in my arms. The doctors came back in and sat down. They explained that they needed to confer since one of them was still a student. I wanted them to hurry up and just tell us what they thought. The doctor looked at Jeff and then right at me. His eyes glassed over.
I will never forget his exact words: “You mentioned SMA.”
I remember something that felt like a heat wave come over my whole body. I covered my face with one hand while holding my baby girl in the other. I was certain someone had kicked me in the stomach. I was burning up. I knew he was right, but somehow I was shocked. I heard his words, but I stayed in the place of “Not my baby; not us.” I wish I could explain the pain of that moment, but there really is no way unless you’ve been there.
The doctors didn’t explain what SMA is or how it happens. We asked the few questions we could articulate at the time. A blood test was ordered; we would get the results in three weeks or less. I didn’t need to wait for a blood test; in my heart, I already knew. We left that hospital with the world looking a lot different than when we showed up.
After you’ve been told your baby has a fatal illness, nothing in the world makes sense. Everything is wrong, so very wrong. I think back on the first couple of days after we found out, which wasn’t that long ago, and I don’t remember a lot. Obviously, a ton of crying happened — a ton. I cried so much, all my tears just stopped coming out. My mom and sister kept bringing me water to prevent dehydration and because I still needed to feed Blake. I remember telling my mom I was in physical pain. I hurt all over. It was surreal. It was horrible. Jeff kept telling me he felt like we were on the outside looking in, like we were watching an awful movie.
Sometimes it still feels that way.
One of my very good friends has someone in her immediate family with terminal cancer. Before Blake had a diagnosis, she knew how much I was struggling with the unknown —the anxiety and fear over what might be. One day, she said to me “I know it’s so hard but you have to try to live for today and today only.” I thought it was impossible to do, even though I saw her doing it.
After everything we’ve been through, she was right then. She’s right now. I’ve learned it is the only thing we can do. Jeff and I try so hard every day to pull ourselves out of the darkness that can swallow us up. It’s extremely difficult, but Blake needs that from us and so does our other daughter Kenley. We’ve been trying to enjoy our life as a family of four. Blakey is still healthy enough to go most places, just for shorter periods of time. We’ve been to the beach a couple times; recently, we went to the zoo. We even run to Target or the grocery store on a rare occasion.
There are days when I can’t see past the darkness. It is with me all day long and there is nothing I can do about it. On those days I rely on my mom, my sister or Jeff to help me more.
Those are days when I hold both my babies as much as I can and just do my best.
Follow this journey on Still Finding Sunshine.
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