Tanner's Story, Part 1

Tanner was a very typical baby. There was nothing exciting or weird about the pregnancy or his delivery. When he arrived he was completely perfect. As he grew he was extra smiley and happy, but also very mommy needy. He didn't like to be held by other people and had a lot of stranger anxiety early on. There was nothing about his development that concerned us at all until it was time for him to crawl. Both of his 2 older brothers started crawling at 8—9 months and he wasn't even close to crawling at that age. Still, I wasn't all that worried since I knew every child is different. I had a niece that didn't crawl till after she turned 1 and now she is a completely healthy and normal 10 year old. Tanner finally started crawling at 11 months old. It was supper slow, but it was normal 4 point crawling. He still wasn't pulling to a stand or close to walking but again, I thought he was just slower than his brothers. The doctor wasn't concerned at all about him at all at his 1 year check up. But slowly in the few months after he turned 1 I became more and more concerned. He could cruise on furniture if you stood him up but he would drag his feet. He did not pick them up at all. I couldn't hold his hands and have him practice walking like I would see other kids much younger than him do. He still wasn't close to pulling to a stand. I was beginning to feel something was definitely wrong. I began to ask moms around me if they had seen anything like this. No one had but most would say not to worry. ‘Some kids don’t walk until after they are past 18 months old. Every child is different.’ And I got that, but I knew it was something more. He wasn't getting stronger. He was at a standstill as far as getting new abilities ever since he learned to crawl. At Tanner’s 15 month well child check up I brought up my concerns to my doctor. It wasn't just that he wasn't walking, it was more than that. Luckily my doctor listened to my concerns and didn't just blow them off. He had known me for years and knew I wasn't just an over paranoid mom. He said that he was going give me a referral to see a neurologist. I was confused since I didn't know much about neurologists and I didn't see the relationship between them and my son’s leg muscles, but I agreed. When I tried to schedule the appointment the receptionist told me the soonest available appointment was 5 months away. I thought that was crazy and asked if I could do something in the meantime, like start physical therapy. They sent a note to my doctor and he pulled some strings with the neurologist and got us in the next month. This neurologist specialized in Spina Bifida. She ordered for Tanner to get an MRI to rule out tethered cord. The MRI was a very hard emotional step for me. My super needy mommy’s boy had to go under anesthesia and get an MRI and that scared me. But everything went perfect and Tanner had his MRI. The next day I waited anxiously for the results. Finally someone called and said the MRI was normal. No Spina Bifida and nothing abnormal on the MRI. I was so relieved. In my mind this meant that he was just going to need some physical therapy and he would be just fine. However the nurse on the phone said in addition to starting physical therapy I should also make an appointment with a neuromuscular specialist. I made the appointment but the soonest available spot was 3 months out. This time I wasn't as concerned about it being so far away. I really thought physical therapy would help and maybe in 3 months he wouldn't even need that appointment any more.

It took about a month before Tanner started physical therapy because of the lack of open appointments. How long everything was taking was so frustrating to me and I felt desperate to get him help. When we finally started, the PT said she thought he would “catch up” within 6 months. I was relieved to hear it. After all he was so close to walking. He could cruise on furniture. He could climb the stairs. He crawled normally (but still slow). But after starting physical therapy it became more and more clear to me that he was not getting any stronger. He wasn't making any progress at all. I started to anxiously await that date with the specialist which was much closer now. I wanted so much to help my sweet little boy and I felt so hopeless. I researched as much as I could online but I mostly found very scary diagnoses that I would completely skip over. I didn't want to accept that he had one of those. Not until I had to.

The day had finally arrived for our long awaited appointment. I was so nervous. I feared the doctor wouldn't be able to figure out what was wrong, and I feared they wouldn't be able to help him even if they knew what was wrong. I sat with the doctor as he analyzed Tanner. He was very kind and very thorough, asking a lot of questions. I was even amazed at how cooperative Tanner was being. Eventually he said "I have a diagnosis for you: Spinal Muscular Atrophy". It meant nothing to me. I didn't know if that was good or bad. A small part of me was relieved because the mystery was over, but the rest of me was so scared at what this meant. He started to explain SMA to me and that there was no treatment or cure. I mustered up my courage and asked. "Will he get worse?" His reply "Yes, it is progressive." Then the tears came. I tried to stop them. I didn't want to break down in front of this stranger. But they wouldn't stop. It felt like I had suddenly left my life and entered a really bad dream. He immediately went to get the SMA expert, Dr. Swoboda, from down the hall. She looked at Tanner and confirmed what the other doctor said, SMA type 2. Time seemed to stand still, but we were there over 4 hours as we met with the genetic counselor, physical therapist and nurses on Swoboda’s team. Everyone gave us a lot of information which was hard to process at the time. They started doing an EMG and got a blood sample to confirm the diagnosis. As much as I wanted to be in denial and believe the blood sample would come back and tell us they were all wrong, I knew that they were right. Two weeks later the blood sample came back: Positive for Spinal Muscular Atrophy.


To be continued…..

Tanner was born April 20, 2011. When he failed to meet milestones like pulling to a stand or learning to walk we became very concerned. On December 13th, 2012 our sweet Tanner was diagnosed with Spinal Muscular Atrophy (SMA) type 2. At the time of his diagnosis, Esther was 7 weeks pregnant with Skyler and we were told that Skyler would have a 1 in 4 chance of having SMA as well. Skyler was born July 29, 2013. Shortly after, he was tested for SMA and was found to also have this devastating disease.

Spinal Muscular Atrophy (SMA) is a rare degenerative disease that affects the motor neurons. Motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, lifting your arms, breathing, and swallowing. Slowly SMA robs these children of all of these activities. The brain’s cognitive functions and the ability to feel objects and pain are not affected. As yet, there is no treatment or cure for SMA.