Man Meets Wild (part 1)

Have you ever came face to face with a bear? Imagine looking into his black, beady eyes as he stares intently at you. Having to size up his paws, knowing that they could knock you out in one swing. Seeing his massive, gnarly teeth showing how he would finish you off. Trying to figure out how to escape as you know you cannot out run this ferocious animal. He is very unpredictable.

We have had to come face to face with a fierce bear.

Our bear is Spinal Muscular Atrophy Type 1. It is unpredictable and it is scary. But since we have arrived at this point we have to try and think clearly about our next steps.

Let's talk about Spinal Muscular Atrophy type 1 (SMA1) for a minute. It is a neuromuscular disease that is passed genetically to children by their parents. Both Blake and I carry a recessive gene resulting in a 25% chance of having a baby with SMA.

SMA1 robs infants of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.

The Start of this Journey

Every doctor would comment about how strong his neck was, he was lifting and holding his head up, and bobbing it around. He would move his legs and crawl up my chest.

When Mason was born he was a strong baby. Everything was perfect. I had the natural birth that I had been envisioning my whole pregnancy. Mason latched and nursed with ease. A few hours after he was born, I was ready to head home but since he was born in the evening they told us to stay and get some rest. Of course there was no way I could sleep. I stood staring at this new creature with such awe. It is truly amazing what our bodies are capable of.

Red Flags

Shortly after Mason was brought home we noticed that his right arm would dangle behind him twisted with his hand in a fist. Of course, as a first time mom, there are so many things that you worry about. So I hopped on Google. I started researching and came across an article showing baby reflexes. The Moro Reflex is a startle reflex that every baby should display. You pretend to drop the baby and their arms fly up. I tried it on Mason and his eyes grew very big but his arms did not move. I found this to be alarming. I took him in to see his doctor and told her about my concerns. She performed the test herself and said he had a small reflex and not to worry. I brought up my concerns about his arm positioning and how he held his one hand so his wrist was always turned out the wrong way. She said that since I was very tiny when pregnant he just had not had time to adjust to all this space. She took his measurements and sent him on his way.

At about 6 weeks I took Mason to the chiropractor for his general health and inquired about his arms. She said it looks like Erb's Palsy. I of course started googling once again. Erb's Palsy is a birthing injury from the head and shoulder being pulled that results in nerve damage. From my search results I was freaked out. I called to book Mason in to see his doctor again but there was no availability for a couple weeks. With Mason being so young I read that every day counts when it comes to physiotherapy to help with Erb's. I proceeded to head a block over from our house to the walk in clinic the same day that he saw the chiropractor. I raised my concerns about his wonky arm and his Moro Reflex. He then referred me to a pediatrician in town and physiotherapy. The physiotherapist was great. She gave us exercises and useful information about Erb's.

This was just the start.