So, Judah needs to wear a helmet. For 23 hours a day. For 6 months. Yeah, big bummer.
Let's start at the beginning - right back to
his beginning...
Squishy nose... squishy face... squishy head.
All in all a pretty normal appearance for a 7-pound-10-ounce human that has just propelled himself at lightning speed through a pea shooter.
We inquired about Judah's squishy-ness right away, but the nurses convinced us that everything would straighten out in time.
So we went home and tried to get some sleep and made jokes about our little boy's ability to crank his head allllll the way to the left. Soon enough his nose straightened out and his face filled in, but his head remained slightly swooped to one direction. We weren't too concerned about his head shape--we still believed it would work itself out in time--but it became more apparent how much he disliked turning his head to the right side, or even hold it in a neutral position. Through a series of visits to see a chiropractor, family doctor, midwife and pediatrician we were made aware of Judah's condition:
torticollis.
Basically, torticollis is caused by shortened neck muscles on one side, resulting in the head being held at a distinguishable angle. We affectionately call it Judah's "head tilt." His torticollis is the result of Judah's positioning in the womb. Because the neck muscles on his right side were so tight, Judah was unable to turn his head to the right side or even hold it securely in a forward-facing position. Even if he managed to look at us straight on, his right ear drifted towards his right shoulder and his chin tilted to the left--giving him the appearance of perpetually staring off into his metaphorical future.
We tried rolling up receiving blankets to position his head in a neutral position; we placed all his toys on his right side so he would be encouraged to look that direction; we reduced the amount of time he spent in his carseat (I used the baby carrier a LOT); we would turn his head to face the right side when he was sleeping; we gave him as much tummy time as he would tolerate; we held him in specific positions to keep him from resting his head the "wrong way"... And so forth. The medical community calls these techniques
repositioning, and the hope is that these efforts (which persuade the baby to spend more time on his "bad" side), along with the natural growth patterns of the infant's head, will encourage symmetrical head development.
Unfortunately, our efforts weren't enough.
Judah's head, albeit somewhat misshapen right from the get-go, wasn't rounding out correctly, and his weeks (before we knew what was going on) of preferring to sleep only on the left side weren't helping the condition. He had
positional plagiocephaly: a flattening of his head due to his torticollis.
Notice the difference in where his ears are located
SWOOP.
Our pediatrician sent us to Children's Hospital where they confirmed that Judah's head was looking more like a parallelogram than a symmetrical sphere. This is especially evident when you look at Judah from above his head. His ears are a couple inches off and his head looks like it's swooped to the left. It was unlikely that his head would heal on its own, but we had 9 weeks until our follow-up appointment. If his head shape didn't show significant improvement we would need to consider helmet therapy if Judah was going to have any chance of having a normal shaped head for the rest of his life.
The plan was for us to start specialized
physiotherapy as soon as possible. The sooner we could strengthen Judah's neck muscles on his right side, the more willing he would be to hold his head in that direction, and ultimately to sleep on that side-- hopefully applying enough counter pressure to reduce the asymmetry. Unfortunately the hospital where Judah would be doing physio was unable to get us in for his first appointment until TWO MONTHS after our consultation at Children's! In fact, our first physio appointment was a mere five days before the follow up appointment at Children's, where we would find out if the helmet was a necessity or not.
Needless to say, we were discouraged. I called other hospitals and even local physiotherapy clinics to see if we could start working on Judah's head sooner. Because his condition is so specialized, other physiotherapists weren't willing to take on his case--but we were determined to do more than sit and wait two months while our son's head had the likelihood of progressing further into severe plagiocephaly.
Enter YouTube.
Yes, YouTube. Say what you want, but the videos we found on "physiotherapy for infant torticollis" were extremely helpful (the videos were made by physiotherapists--and we were sure not to do anything that looked sketchy or extreme), and within days of starting our own exercises (or "neckercises" as we like to call them), Judah's range of motion was improving. Five to six times a day we would turn his head, gently massage his neck, and carefully hold his head and shoulder in their proper positions to stretch and strengthen the right side muscles, all the while ceaselessly praying for him and for full healing of his head and neck.
Unfortunately, our efforts weren't enough.
When we arrived at our first physio appointment, the therapist was pleasantly surprised that Judah's neck had full range of motion and wasn't tight! ... but it was evident that those right side muscles were still much weaker than the ones on his left. The exercises she gave us were the same as the ones we saw online, but she included a few more specialized ones that would hopefully build strength on the right side.
A few days later, we arrived for our follow up appointment at Children's. I felt hopeful and happy. In fact, many of our friends had mentioned that they thought Judah's head was looking better and rounding out. I could never tell if they were being perfectly honest, or just perfectly nice, but I wanted to believe it! The occupational therapist silently took Judah's measurements while we sat with baited breath. After jotting down her findings and comparing numbers on Judah's charts, she told us the news:
Judah head had showed no improvement over the course of the past nine weeks.
I was crushed.
NO improvement? After all our hard work? After all those prayers?
She didn't sugar coat it: Judah would need to proceed with helmet therapy if he was to have any chance of having a normal head shape and facial appearance.
If we declined the helmet the possible outcomes are grim: Facial asymmetry. Sinus problems. Chewing issues. Vision problems. Jaw issues. Inability to wear glasses. Inability to wear sports helmets.
Problems, issues, inabilities. The words swarmed through my head and all I could think of was this chubby, smiling little boy who kept reaching his hand out to bop Mummy on the nose, and how I had failed him. Failed to notice his head tilt sooner. Failed to do his neckercises often enough. Failed to keep him out of the carseat more regularly. Failed to fix it.
Thankfully, we serve a wonderfully faithful and gracious God--and one who quickly reminds me of
his power,
his will for us and
his love!
["
For I know the plans I have for you," declares the Lord. "Plans to prosper and not to harm you; plans to give you a hope and a future." ~Jeremiah 29:11]
Sure, Judah will need to wear a funny-looking helmet for six months. Sure, he might be slower at crawling, walking and running because of it. Sure, people are going to point and stare and ask questions and maybe even feel uncomfortable around him. And sure, perhaps after the end of the therapy Judah's head and ears still won't
quite line up.
But big picture? Judah is healthy. He's growing. He's developing. He has no other medical issues. He's happy, smiley, giggly. He is so loved. (He loves his cat!) And he will know Jesus!
Every day I have to surrender my dreams and my fears to the Lord. I need to submit my stubborn, selfish heart to God and receive His good plans for me. And I have learned that this means I need to wake up every morning and lay David and Judah on the alter. I can't keep them safe; I can't heal them; but by the Lord's grace I have one more day with them. And by his power I can love them, care for them and cherish them for all the days to come.
In a few years we'll look back and remember the helmet... and we'll be reminded that in the grand scheme of things, it was just a little hiccup on a much larger journey of faith. And we'll be grateful. And we
are grateful!--for the amazing doctors, therapists and specialists; for those who pray with and for us; for our special little family of three; and for a great big God who cares for his children.
["
Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like the shifting shadows" ~ James 1:17]
Praise God from whom all blessings flow :).
