january 24th, is moebius syndrome awareness day!
When our family said yes to adopting our 8th child in June of 2018, we had never heard the term “Moebius Syndrome”. The day we put Lincoln in our Megavan and drove him to his new home, he was 2-weeks-old. He is our first special needs infant adoption and we had the challenge of learning about his syndrome in conjunction with learning his unique personality. We are 2.5 years into parenting a child with Moebius and I am by no means an expert! But I would have loved to have had more access to articles and blogs by parents who have children with this unique special need when Lincoln was born. Moebius Syndrome is by no means a “minor” need, but we have learned so much about it that I want to share with you today.
what is moEbius syndrome?
Moebius syndrome (sometimes spelled Mobius) is an extremely rare congenital neurological disorder. It occurs in 2-20 people per million. The absence or underdevelopment of the 6th and 7th cranial nerves causes the symptoms of Moebius. It is characterized by facial paralysis (7th cranial nerve) and the inability to move the eyes from side to side (6th cranial nerve). It usually affects both sides of the face. This makes the face appear mask-like due to the lack of facial expressions. It means a person with Moebius cannot frown, raise their eyebrows, pucker their lips, or…smile. Paul Julius Mobius, a German neurologist, first described the syndrome in 1888.
No one knows exactly what causes Moebius Syndrome, but it is thought to be caused by genetic and/or environmental factors. And most cases of Moebius occur in children with no history of the condition in their families. People with Moebius have normal intelligence, although their lack of facial expression is sometimes incorrectly understood to be dullness or unfriendliness. In our experience, people’s misconceptions have been the most challenging part of Moebius syndrome so far.
Moebius syndrome’s unique health concerns
There are only two strict clinical criteria for a Moebius syndrome diagnosis. However, there are MANY other health issues that can go along with Moebius. Some children experience none of these Moebius “extras”. Some experience many of them. Here is a list of some unique health concerns that can possibly accompany a Moebius Syndrome diagnosis.
- Trouble swallowing or sucking
- Difficulties with speech/articulation
- Frequent drooling
- Inability to close eyes or blink
- Other cranial nerve involvement
- Muscular hypotonia
- Cleft palate
- Dental problems
- Hand and foot problems including club foot and missing or fused fingers
- Limb reduction deficits
- Other limb anomalies
- Hearing problems
- High palate
- Motor delays
- Poland’s syndrome (chest wall and upper limb anomalies)
- Strabismus (crossed eyes/misalignment of the eyes)
Lincoln’s medical journey
Lincoln does not deal with all of the Moebius health issues listed above. But he deals with many of them (in addition to being an ornery 2 year old some of the time!). Here is a list of the specialists he sees for his medical needs…
- Ophthalmologist – Lincoln sees an eye doctor every 4 months who specializes in surgical eye procedures. The purpose of these visits is to monitor his strabismus and to be sure his eyes aren’t crossing enough to affect his vision. (Due to the lack of horizontal eye tracking, a small amount of crossing is expected). Interestingly, Lincoln is also far-sighted and will need glasses at some point to help (though I have no idea if that is Moebius related!).
- Hand Specialist – Lincoln is missing all of the fingers on his right hand and all but his pinky finger on his left hand. Once per year we see the hand specialist for guidance. For now, the doctor feels Lincoln is adapting well using both hands together for feeding, picking things up, coloring, etc. But a prosthetist could build adaptive equipment should he need assistance. He is also being monitored to be sure the small bones in his right hand don’t need to be shaved down so that they won’t break down the skin and cause pain.
- Orthopedic Surgeon – Lincoln is missing his left foot and his right foot is curved in (with a bone missing in his “big” toe). When he was an infant, Lincoln wore an orthopedic shoe on his right foot to be sure it didn’t curve in further. There have also been talks of removing his “big” toe if it becomes painful to walk on (but we haven’t experienced that yet). Lincoln’s left leg (with the missing foot) is the same length as his right leg. When he is 7-8 years old, his orthopedic surgeon will stunt the growth plate surgically so that the left leg will stop growing. This will enable Lincoln to wear a wide variety of prosthetic legs as he grows into adulthood.
And more specialists!
- Prosthetics – Lincoln usually prefers to go without his prosthetic foot/leg when we are at home. He has no trouble getting around without his left foot. But he is also a champ running around on his prosthetic foot/leg when we put it on! For prosthetic fittings, we see his sweet prosthetist regularly. He has already outgrown one leg and many shoes! In the future, he will be able to have a prosthetic leg built for ANY activity he wants to try.
- ENT – Due to a higher risk of hearing loss, Lincoln has been monitored by his Ear, Nose, and Throat doctor since infancy. But his hearing seems to be unaffected by Moebius.
- Neurologist – Lincoln has also been monitored by his Neurologist since infancy because Moebius is a Neurological condition. He had an MRI at 7-months-old to verify he is missing his 6th cranial nerve and that his 7th nerve is absent on the right and hypoplastic (underdeveloped) on the left. Because of this we see a TINY twitch of his lower left lip when he is trying to smile. Which is absolutely adorable!
- Aerodigestive Clinic – Because of Lincoln’s history of aspiration, he had a triple scope (laryngoscopy, bronchoscopy, and endoscopy) procedure done at 9 months old by a pulmonologist, a gastroenterologist, and an ENT surgeon. Everything looked great, except the pulmonologist found some tracheal floppiness near his lungs (which means we perform Chest Percussion Therapy on him when he’s sick).
- Speech Therapy – Lincoln knows (and speaks) lots of words now that he’s 2.5 years old. But he DEFINITELY has articulation issues due to his facial paralysis. He currently can’t say the “B”, “F”, “L”, or “P” sounds. Pre-Covid, he was seeing a speech therapist once per week.
- Occupational Therapy – Lincoln had hypertonia (spastic/rigid muscles) as an infant instead of the hypotonia expected with Moebius. This could have been due to other factors and was cured in his first 6 months. Pre-Covid, he also saw his occupational therapist to learn to do life with his missing fingers and foot.
- Feeding Therapy – Lincoln struggled to suck on a bottle at birth. For the first 4 months of his life we squeezed his cheeks around the nipple to create an artificial latch, but I noticed signs that he was aspirating formula into his lungs. At 4 months old he failed a Barium swallow study and was immediately admitted for an NG Feeding Tube to be inserted through his nose and into his stomach. We fed him formula through his NG tube for 4 months until he passed his next Barium swallow study and we tossed that tube to the curb! At 2.5, Lincoln uses his hands to push on his cheeks while eating. This helps the food get back between his teeth when it falls to a place his (limited mobility) tongue can’t reach.
Lincoln Cole Roush – Perfect In every way
Having an infant with special needs was more intense than bringing home toddlers with special needs. We saw sooooo many specialists in Lincoln’s first year. In fact, Lincoln had close to 90 medical appointments/therapies in his first 12 months, including 2 hospital stays and 4 months with a feeding tube. Talk about drinking from a fire hose! However, God saw it fit to put this little stinker in our family, and we could not be more thankful. I know that there is a good chance Lincoln will struggle with his special need as he grows. It will be hard for him to deal with his adoption, racial issues, teen angst, and being “different” in the world’s eyes all at the same time. I can only hope he always remembers to see himself the way the 9 of us see him.
We’re lucky you’re ours!
- You LOVE all things Frozen, Lava (the Disney Short), to sing “Father’s House” with your big sister Carson , fruit snacks, your Kindle, your big brother Parker, and your Mommy’s phone.
- Your laughter lights up our home.
- Having your diaper changed makes you angry. And you hate having cream put in your gorgeous hair.
- You say “NO MA-MA!!!!” all day long. Because you’re two.
- You give the sweetest hugs and kisses. But only when you are in the mood!
- You are so very sweet to animals.
- Given the chance, you are going to slay EVERY expectation we have for you.
- You have reminded me that different isn’t bad; it’s just different. And hard isn’t bad; it’s just hard.
- Your smile is there for those who take the time to see it.
- It is my complete honor and privilege to be yours, sweet little man. We see you and we treasure you and we will shout your worth every opportunity we get!
Different is not bad, it’s just different
“A child being born with a difference is not tragic. It’s extremely important to show our children how capable and wonderfully made they are. If we treat them as flawed or limited, that is who they will believe themselves to be – and THAT would be the tragedy.” – Lucky Fin Project
I have learned some things about myself parenting a child with Moebius syndrome as well. Strangers often like to comment that Lincoln is serious/grumpy/tired/sick. And it can make them uncomfortable when I tell them he’s just missing his 6th and 7th cranial nerves and he WILL NOT be able to smile at them, no matter how goofy they act trying to engage with him. People don’t always see Lincoln the way our family does. And that will only get harder as he gets older. I’ve been shocked by how sad that makes me. But also how precious it is when people are drawn to what they see in our little guy (like his precious Sunday School Teachers).
Moebius syndrome resources
There are not as many resources available for Moebius syndrome as their are for other special needs. This is the main reason I want to educate and inform people in our community about this rare syndrome. I am also blessed to be a part of a great Facebook Community of other parents of kids with Moebius in addition to adults who have Moebius themselves. I have also found the following sites extremely helpful on our journey…
- Moebius Syndrome Foundation
- Rare Diseases – Moebius Syndrome
- Johns Hopkins Medicine – Moebius Syndrome