Hi, I'm Destiny. My husband Bryson, and our two sons Hamilton (2) and Clay (3 months) live in the Washington D.C. area. Hamilton has a rare neurological condition called Moebius Syndrome. He can't make facial expressions or move his eyes laterally, has low muscle tone and difficulty moving his tongue to eat or speak. Hammy, my nickname for him, loves playing outside, dumping water, and running around. We are excited to share more about Moebius Syndrome with you all.
Miggy: Hi Destiny! Thanks so much for participating in today’s special needs spotlight. Lets start at the beginning, can you take me back to the day you knew you found out your son had Moebius Syndrome? Was this during an ultrasound, shortly after birth or sometime later? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Destiny: We found out Hamilton had Moebius Syndrome when he was about two weeks old. When Hamilton was born the attending pediatrician noticed his small chin and worried he wouldn't be able to breathe or eat correctly. He was breathing fine, but soon after we tried to give him a bottle and he couldn't suck. The doctors noticed other physical markers of a genetic syndrome (epicanthil folds, hypotonia, and several other characteristics) and so Hamilton was sent to the NICU for a feeding tube and further evaluation. The NICU doctor sent pictures of Hamilton to a geneticist and the first guesses at what he could have were very severe. It is very rare that a baby doesn't know how to eat. Luckily, every test that was run came back normal.
Hamilton was born at a small hospital and since he wasn't eating full feedings we thought he was going to need a permanent G-tube to eat. The hospital Hamilton was born at didn't have pediatric surgeons on staff so we decided to transfer him to a larger hospital in the area for surgery when he was two weeks old. At this hospital a neurologist came to see him and diagnosed him with Moebius Syndrome. Moebius was sort of a relief, honestly. We had spent the first two weeks preparing for severe intellectual and physical disabilities, or the possibility of not having our sweet little boy live a full life. I have to note that there are many children with Moebius Syndrome who are far more affected, and do have complications with eating, breathing, and have more severe physical limitations. We were relieved because we knew Moebius isn't degenerative and we knew what we would be dealing with.
Miggy: Will you please educate us on Moebius Syndrome and explain how this affects Hamilton and your day-to-day life?
Destiny: Moebius syndrome is characterized primarily by the lack of the 6th and 7th cranial nerves. The 6th cranial nerve powers lateral eye movement and the 7th powers all facial expressions. Hamilton can't move his eyes side to side, blink, smile, frown, or make any other facial expressions.
Day to day it doesn't affect us as much as it did the first few months. He used a feeding tube in his nose for a few months until he got the hang of a special bottle to eat. Now, though he might be the messiest eater I've met, he eats everything we do. He can't suck and he uses his fingers to push food around in his mouth if his tongue can't do it (something we work on), but other than that eating is mostly normal. He goes to occupational therapy and still has physical delays (he did not walk until he was almost two), but again these feel very minor and we feel blessed to have a funny, loving, active little boy.
Sometimes his speech is hard to understand, but he's two, so that's typical. We work with a speech therapist and are working on p, b, and m sounds. When he was first diagnosed I worried about the lack of expressions, but my husband and I have no problems understanding his emotions. And, his laugh, is pretty much the cutest thing I've ever heard in my life.
Miggy: What are the biggest worries you face for Hamilton? What are your hopes and dreams for Hamilton?
Destiny: I worry about Hamilton socially. I worry about bullying. So much so that I just can't think about it, I push it to the recesses of my mind and try to ignore it. I worry that people will treat him differently, like he doesn't know what is going on because he looks different, but he will fully understand if he's being made fun of. I expect Hamilton to live a relatively normal life. He's going to have challenges, but I hope he can find good friends. I also hope that he can help others. He's a really sweet little boy, and I hope he never loses that kindness. I also hope Hamilton is secure in who he is. We've met amazing adults with Moebius who have wonderful fulfilling lives. I hope Hamilton can do the same.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Destiny: When Hamilton was about 6 months old we went to a street fair. A little boy ran up to us and said "I can make any baby smile!" He was pulling out all his best tricks, including making faces about six inches from Hamilton's face. He didn't give up for a while and we couldn't bring ourselves to tell him. When he walked away my husband and I burst out laughing. This sort of thing also happened in checkout lines multiple times. I still say smile when we take pictures. A few months ago we had pictures taken and the photographer said "he looks sort of serious." I had forgotten to tell her he couldn't smile.
Miggy: How can people best approach or respond to Hamilton? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Destiny: People have been so sweet to Hammy, particularly when they know he can't smile. Young kids in particular are so nice to play with him and treat him like one of the gang. It isn't that noticeable yet, but I think it will be more noticeable as he grows up. I really like it when he's treated as a typical two year old.
I'm not that sensitive to people saying "smile." It's very rare not to be able to smile. I've heard from other parents of kids with Moebius who are more sensitive to these things, so I think it's a very personal issue.
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your Hamilton?
Destiny: Hamilton has a younger brother Clay. Clay is only three months old, so hasn't given a lot of support to Hamilton. Hamilton LOVES Clay. Almost every morning, first thing in the morning, Hamilton runs into Clay's room to wake him up. He also constantly wants to give him kisses and rest his hand on Clay's head. Clay also seems to really like Hamilton. I'm so excited for them to grow up together and be friends. Siblings were and are a big part of life for me and my husband, so we really want that for our kids.
Miggy: What is the biggest lesson you’ve learned since becoming Hamilton's mom?
Destiny: I had never spent anytime around special needs kids until Hamilton. I joke that my heart grew three sizes the day he was born. Now when I see a special needs child I want to go give them, and their parents, a big hug. I learned not to be intimidated around special needs families, now I'm part of the club. I've also learned that there are so many kids who have struggles in some way. So many friends have shared their child's medical histories, diagnoses, or needs and I never would have had any idea until they told me. Everyone deals with hard things, it's just not always visible on the outside.
Destiny thank you so much for sharing your sweet family and especially your darling Hammy (love that!) with us today and educating us on moebius syndrome. One reason I love doing these spotlights is that I am always reminded--once again!--how little I know & to always reserve judgement. I would have never known that there are people who don't have the ability to smile or make facial expressions in general...and now I know. Also I laughed out loud at your funny story--poor kid never stood a chance! Thanks again for sharing your story and educating us about moebius syndrome.
Thanks as always to you wonderful readers for your love and support. YOU are what makes this series so special. Please, if you know someone who would make a great spotlight have them email me at thislittlemiggy at gmail dot com.
Have a fantastic weekend!