Moebius Syndrome (Tobias's Journey)

When Tobias was 6 weeks old, I noticed he wasn't smiling yet.  The pediatrician said he will smile soon.  Everyday, I made silly faces, weird sounds and looked like a crazy mom all with the hope that he would smile.  A couple days later, I was up in the middle of the night doing what every doctor says not to do...Google his symptoms.  I looked up "What if my 7 week old isn't smiling yet?".  Many moms were saying how normal that is, but then I came upon a comment that mentioned their child had something wrong with the muscles in their face, so their baby didn't make a crying face when he was upset.  I quickly stopped reading because it dawned on me Tobias also did not make a crying face.  Why had I not noticed that before?  I ran to my fiance and told him I thought something was wrong with Tobias's face. He told me not to worry about it.  I also noticed he wasn't blinking...like at all.  He would only close his eyes to sleep.

Over the next few days I expressed my concerns with family members and close friends, all of who told me I was worrying too much and he would be just fine.  But my mom gut told me I needed to get this checked out.

At 2 months old, we had a check up with his plastic surgeon to talk about one of his upcoming surgeries.  I took that time to mention that he wasn't blinking or really moving his face.  As the doctor listened to my concerns, she then expressed her thoughts on what was wrong with him.  The only thing I remember her saying is that he wasn't going to smile.  I asked, "so he isn't going to smile at all?"  and she said "No.  He seems like he will be unable to".  After that I don't remember anything she said.  I blanked out because I was trying my best not to cry.  I was in shock.  Going into that appointment, I was expecting to hear, "He will move his face after some physical therapy" or "Give it a few months because every child is different".  I never thought we were going to get the news that my sweet little boy was never going to smile.

As we left that appointment, I tried holding in the tears until we got to the car, but I just couldn't.  I avoided any elevator that had other people in it, because I did not want anyone to see me crying.  Once we got in the car, I just lost it.  I felt so bad I was crying while Tobias just stared at me, but I couldn't help it.  Thankfully, we already had plans with friends of ours, so I was forced to suck up my tears when we got to their house.

While we were there, the doctor called us to let us in on her findings.  My fiance put her on speaker so we could hear what she had to say.  She said after we left, she did some research and believed Tobias had Moebius Syndrome.  Right away she told Adrian to tell me not to google it, but how could I not?!  As she was saying his lack of blinking, limb abnormalities, and no facial movement was all linked to this condition, I scrolled through the many faces I found on the internet.  I went crazy searching every website that came up.  As I read the many articles, everything just clicked.  I thought, "This is it.  This is exactly what he has".  It all added up.   Everything that was different about him completely fit the bill.

The next couple of days were really hard for me.  When I read that there was no cause and it just happens at random, I thought "why us?!"  There were moments I did not think I was strong enough.  I would catch myself thinking about it and just break down in tears.  Almost a week went by and I found myself in my kitchen by myself, just crying.  As I stood there I told myself, "You need to stop!  You can't just cry about this forever."  As crazy as it sounds, I was a lot better after that.  No I wasn't all rainbows and sunshinet, but I was more accepting and positive about the situation.

As days, weeks, and months have gone on, it has become a lot more easier.  I can now talk about it without tearing up.  I found the more I talked about it, the better I felt about his condition.  After writing a couple posts about his condition, a few moms reached out and praised me for being so open and honest, which ultimately led me to start this blog. Now I am no longer worrying about the fact that he can not smile at me.  He is laughing all of the time and proving to me that he is such a happy baby.  Every time I hear his giggle, I know that everything will be okay.

I know God gave Tobias to me for a reason and I am hoping writing about his condition and not being afraid to spread awareness for this rare syndrome might just be one of those reasons.  Now I am so thankful God thought his father and I were the perfect parents for Tobias.  We enjoy watching him grow stronger everyday. He is constantly proving all of my worrying thoughts wrong.  Our sweet Tobias is such an amazing boy and we are absolutely blessed to have him.

What is Moebius Syndrome? 

Moebius syndrome is a rare neurological condition that primarily affects the muscles that control facial expression and eye movement. The signs and symptoms of this condition are present from birth.

Weakness or paralysis of the facial muscles is one of the most common features of Moebius syndrome.  Affected individuals can not smile, grown or raise their eyebrows.  The muscle weakness also causes problems with feeding that become apparent in early infancy.  Every 1 out of 500,000 are diagnosed with Moebius.  There is no known cause or treatment. 

How is Tobias affected?

Face: Tobias is unable to move most of his face.  He can move is lower jaw and tongue, but can't utilize the upper part of his mouth or lips.  His jaw is recessed, but has been growing forward just a little bit.  His mouth is smaller, so he will most likely have misaligned teeth.  We are meeting with a feeding specialist next week to ask what is the best way to introduce solids to him.  In the near future, he will also start working with a speech specialist.  There is a smile surgery we might do in the future called Reanimation surgery, but we are not thinking too much about that right now.   

Eyes: Because his eye movement is affected, Tobias can not move his eyes side to side.  He can only move them up and down, so he has to turn his head if he wants to look at something laterally. Tobias is unable to blink, but he does close his eyes to sleep.  When he was a newborn, he wouldn't close his eyes if they were exposed to sunlight or water, but as he is getting older he has learned to do just that.  Will he blink in the future?  Probably not without having to think about it, but we are hopeful he will be able to remind himself to blink when he feels his eyes are getting dry.  In the meantime, we do have an ointment we put in his eyes 3 times a day to prevent dryness and help protect them. 

Limb Abnormalities: As you guys know, Tobias has clubbed feet.  I have a blog post explaining all about that if you are interested.  He also has a small hand with webbed fingers.  Over the next few months, he will have 2 surgeries to separate those fingers, so he can better adapt and utilize that hand. After both surgeries, we are going to travel often to Phoenix for physical therapy of that hand. 

Body Weakness: Another common symptom for kids with Moebius, is upper body weakness.  Tobias is currently seeing an occupational therapist and will soon also start regularly visiting a physical therapist for this.  They are working with him to strengthen his core and help him sit up and crawl.  Tobias will not probably not reach physical milestones, such as crawling and walking, as quickly as other kids, but he will definetely get there!

Just like any other syndrome, every child with this condition is different and their symptoms vary.  Some have partial paralysis.  Some don't have any limb abnormalities, while others are in wheel chairs and have to wear a trachea.  Knowing that, helps me to not compare him to other children, whether they have Moebius or not.  

If you took the time to read this, I just want to say from the bottom of my heart how much it means to me that you took to time to educate yourself about Tobias's condition.  My goal is for as many people to know that Moebius Syndrome exists, as do so many other conditions.  I hope to normalize disabled kids as much as possible.  I know I can not eliminate the shock factor that comes with your child being diagnosed with an unforeseeable condition, but I do hope to help make the acceptance process easier for those parents. Yes its hard having a child with disabilities, but challenges come with parenting no matter the child.  There are going to be obstacles, but it is going to okay!