Nothing about the way Ozzie was born was how i planned it. With Cedric being born 8 weeks early, i had every intention of having a calm and relaxed home birth in a pool in my rumpus room surrounded by soft lights and music that i liked, lavender scented massage oils, my midwife coaching me through delivery, my husband in the pool to catch our baby and then the three of us resting… in our own home, with our new bundle of joy nursing like a champion.

And life took my plans and stomped on them.

Instead, i went into a fast and hard labour 7 weeks before my due date – dilating from 4 -10 cm at a quick pace, 3 pushes and Ozzie was born five hours after we arrived at the hospital. They whisked him away to the NeoNatal table to check him out, as they do with any early delivery… and the first thing the nurse said to my husband was not “congratulations” – but: “I see some slight facial deformities here.” And then she proceeded to tell him everything bad she could find on him. I hadn’t even seen our baby yet, and i remember thinking it was taking longer to see him than it did when Cedric was born… and when she eventually did bring him to me to hold, she said the same thing about the facial deformity… i kept thinking: “What is she talking about? He’s perfect!!” (this woman would turn out to be the most annoying and brash nurse in the NICU staff… everything about her irritated me.)

Ozzie, only hours old.

It didn’t take long to get back into the NICU routine. The coming and going, getting to know which nurses you loved and which ones you HOPED weren’t taking care of your baby that day. And in those first few days, Ozzie had many doctors and residents to see him. Over the course of the first week or so we learned that Ozzie has club feet and would have a long stretch of casting followed by boots and bars to correct the condition. We learned that he is a bit tongue tied, which may or may not be an issue. We will have to wait until he starts learning to talk. We learned that he has a weak suck/swallow/gag reflex and because of this he had a difficult time learning to bottle feed.

Mama and Ozzie – kangaroo care

Then, when Ozzie was only a couple of weeks old, they told me that it was likely that we would never see our baby smile. That they thought he had Moebius Syndrome.

When i heard this, i mentally shut down. It felt like one thing after the other and this was the straw that broke MY back.

It was completely overwhelming.

Never?

Ozzie’s doctors had mentioned Moebius Syndrome a few times during rounds, but no one ever really explained to me what it was in great detail until the Geneticist came. Moebius Syndrome, he said, is an extremely rare neurological disorder, present at birth, that affects (but is not limited to) cranial 6 & 7 nerves. These nerves can be underdeveloped or weak or missing altogether, and it affects 2-20 cases in a million.

WHAT?
Seriously?!

I very naively asked him if there was treatment, like surgery… and he sort of laughed in what i felt was a very condescending way and said; “There is no treatment. If the nerves are missing, they are missing and there’s not much we can do about that.” psh. Like i went to medical school. I’m still pissed about that. (Honestly, some doctors have absolutely NO bedside manner)

So, we moved forward with this information. As much as it sucked, it was better to finally put a name to it. I felt like if i could call it SOMETHING then i could learn about it and find out what the next steps would be.

But we weren’t ready to talk about it yet. We told a few people here and there, testing the waters with their reactions, but for the most part i was like an ostrich with my head in the sand. If i didn’t think about it, it wouldn’t exist – I couldn’t even write or blog about my little baby because just thinking about it filled me with anxiety…

…until Ozzie got RSV and bronchiliatic pneumonia in February and spent 5 days in isolation on the Paediatric ward. We spent the first few days repeating ourselves over and over again to doctors and nurses explaining; “No, that’s normal for him, he has Moebius Syndrome.” to almost everything they said. And on the last few days i even had one student nurse who told me he was excited to meet Ozzie because he heard there was a baby with Moebius on the floor and had spent the night researching it and it how cool it was “cuz it’s super rare” – and when he saw him, he almost looked disappointed that he wasn’t as facially deformed as he thought he’d be. (Jerk.)

Ozzie loves his big brother Cedric

When we were finally able to bring Ozzie home and things were starting to get back to normal, it seemed like my sand had finally all blown away and i couldn’t ignore it any more. One night i turned to B-rad and said: “So,… i guess Ozzie has Moebius Syndrome.”

Acceptance.

We decided it was time to for Artoo to ‘come out’.

so. there it is.

But before you all scamper off to do your own research on Moebius – let me say this. Don’t.

Moebius is a spectrum disorder, which means that not every case is the same. He may have some symptoms/issues but not others and he may have less severe symptoms/issues than other cases. One of the things that has been frustrating (to me, at least) is that as i have started telling people about Ozzie the first thing they do is run to Wikipedia and suddenly they’re experts and they start asking questions about his condition. Questions that I either don’t know the answer to yet, or questions that i’m not ready to share the answer to. And also, if you Google Moebius syndrome you’re going to get a lot of pictures of severe facial deformities that Ozzie just doesn’t have.

So.

Let ME break it down for you, and know that the information i share with you is information that we KNOW or think we know, and information that we’re ready to share. If something is NOT shared in this post its either because a) we don’t know the answer or b) we don’t want you to know. B-rad and i ask that you respect that.

Moebius Syndrome’s common affected nerves are 6&7 as i said, it does NOT affect intelligence.

Cranial 6 Nerve is a Motor nerve that controls the outward movement of the eye. This means that Ozzie cannot look to the side without moving his head. Essentially, he has tunnel vision – but he can and does focus if you are looking right at him and are far enough away that he can see you (about 6-8″). He can move his eyes up and down, but he tends to be cross-eyed a lot of the time, or one eye will move in while the other doesn’t. Also, he doesn’t blink very often or at all. (it’s hard to tell cuz i don’t watch his eyes every second) This means that he will likely have to have eye drops for the rest of his life so that his corneas don’t get damaged. (We met with eye specialists in the hospital but have yet to hear back from them for his follow up appointment….) However, Ozzie is still physically able to close his eyes when he sleeps, so he can learn to blink voluntarily as he gets older.

Cranial 7 Nerve is a Sensory Motor nerve which controls the movement of the face – so sucking, swallowing, facial expression – all these functions live in this nerve. What does that mean? Ozzie has very little sucking ability, but a little is better than none. He has difficulty swallowing, a weak gag reflex, and drools. This is the main reason he stayed in the NICU as long as he did. He couldn’t suckle so he couldn’t nurse. but not just nursing, he couldn’t take a bottle and was fed with an NG tube while we tried different things. Cup Feeding, spoon feeding, syringe feeding, even an NG tube attached to a finger… it didn’t seem like anything would work and we were THIS close to having a Mic-Key button, which is essentially a feeding tube directly into the stomach completely bypassing the mouth. i fought long and hard but eventually we found a special bottle called a “Habermarn” feeder (also called a Special Needs feeder) which worked and we avoided the button. YAY! Thank you nurse Lois (last name unknown) for not giving up and trying different things. So you see, not ALL nurses are terrible.

Beautiful Blue Eyes

People with Moebius can also have low muscle tone. This means that the muscles are on the loose and floppy side. Ozzie will have to work longer and harder to get to the same place a regular kid would. Currently he’s a bit behind as far as holding his head up and neck control, but he will get there. He may also be less coordinated and be a bit behind in movement and motor skills. Right now it’s too soon to tell how that will play out.

Likewise, he may have delays and troubles with speech due to his facial paralysis – but we won’t know for some time.

Some cases of Moebius include some abnormalities in the body such as Club Feet – which also runs in B-rad’s family. So, it’s not certain if the club feet are from genetics or from the Syndrome, not that it matters much at this point. Because the syndrome is so rare, it’s hard to tell whether or not this is a genetic condition or a random occurrence. The research i’ve read so far has basically said there’s not enough information to support either theory.

One thing is sure, though. This syndrome had nothing to do with him being early. Had he stayed inside the full 9 months, he still would have had Moebius Syndrome.

Maybe its a good thing that Ozzie came so early – so that he was surrounded by medical staff who caught his condition early. 2-20 cases in a million; that’s such a big window because often kids aren’t diagnosed right away.

Luckily, because of an amazing NICU doc (Dr. Sankaran) we have been fast-tracked – and Artoo already has a great “team” working with him. He has the best Paediatrician in the city, he has a neurologist, a geneticist, a opthamologist (even though we haven’t heard from her since November), a speech pathologist, occupational therapist, physical therapist, facial/orthodontic specialist, dietician, and social worker. We are in the system, we have been watching Ozzie’s progress, checking milestones – all things considered, he’s doing amazingly well.

He’s since moved from the Haberman feeder to a cleft palate nurser (his palate is fine, it’s just an easier bottle for us to handle.) He’s quite vocal – generally happy, he pretty much only screams when he’s hungry or needs a clean diaper… which is lucky because i don’t know if i’d be able to handle all this and colic too.

He’s growing like a weed, at his last weigh-in he was 17lbs 13 ozs, a far cry from his birth weight of 3lbs 15oz. He’s nice and fat, just the way babies should be. He’s meeting his developmental milestones, for the most part – but he IS a little behind. He won’t be forever.

So, there’s a long road ahead of us. This, we know for sure. With so many uncertainties, B-rad and i rely heavily on each other and have had such wonderful support from our friends and families that we sometimes feel overwhelmed, but in a very good way. The future is unknown, i think at this point the hardest part will be dealing with people’s general reactions when they meet him for the first time. Just the other day i took Cedric and Ozzie to get their Spring pictures done and the photographer asked me: “Can he look this way”, “No, not really. Pretty much just straight ahead” then later: “Does he smile at all?” “Uhm, nope. That’s about as good as you’re going to get.”

Smiley Boy

But the truth is, he has an amazing smile. He has such expression in his eyes, you just know when he’s happy. And he laughs and coos, just like other babies do. But if you can catch him in the right mood – he has the teeniest tiniest hint of a smirk – and i’ll tell ya, it brings me close to tears each time i see it. Because for someone i was told would NEVER smile…. his little smile is the most beautiful thing in the world.

Big Smiles for Daddy

Thanks for reading.
Love
Laura and  B-rad