At this point, only a couple of family members and some super close friends know something I have been refraining from sharing with the world. I have been afraid of what others would think of me as a mom and how they might judge me.
For the past month and a half, Jackson has had to wear a helmet. Obviously the biggest question I get when anyone sees him in his helmet is "Why is he wearing it?" Some ask if something is wrong with him, some ask if he has epilepsy or has had brain surgery. But mostly, people just stare. It's so annoying and yet embarrassing at the same time. It's also just plain rude.
What's the big deal you might ask? Well, anyone who simply looks at my son and knows that helmets are often used to fix flat spots on infants might blame me for being one of those parents who just left their child in a swing, or laid them on the floor or left them in their crib for too long. But that is not the case for us at all.
I know it's pointless to worry what anyone thinks and I have gotten over that now. I even braved taking him to the mall, only to be starred at and asked questions of course, but what bothers me is that a stranger will never know his story just by looking at his head. So even though my mom, my husband Ross, and I have done everything in our power to prevent this very experience, here we are anyways.
So why does he have to wear this ridiculous thing?
This all started when I discovered Jackson had a lump on this throat when he was two weeks old. I took him to my general physician who is also Jackson's Pediatrician. She sent us to an Ear, Nose and Throat specialist who then sent us to have an ultrasound done on his neck.
His ultrasound was done at Children's hospital, and of course we had not put his stroller in the car. So I spent 8 hours at the hospital carrying Jackson back and fourth from the ultrasound waiting room to the Ear, Nose and Throat Dr. while they tried to figure out who I had to get results from. My back was killing me and I hadn't eaten since that morning. I was starving, worried and my back and arms were killing me from carrying him all over the hospital.
Eight hours later I stood by an old corded telephone just waiting to be given the results of an ultrasound that had to be done in a public waiting area where I might have to be told in front of a room full of strangers and their sick children that my child might have a tumor or something else just as terrible.
Then finally my phone call came. It turned out that the lump was actually a stiff muscle in his neck that had blood trapped inside it. I had to then go back and speak with the specialist on duty who read his ultrasound. I was told that since Jackson was delivered with the aid of a vacuum, it was most likely that the muscle in his neck was stretched, allowing blood to enter the muscle and snapped causing the muscle to tighten. His condition is called "Toriticollis", where a baby has a preference of which side they will turn their head and is also associated with neck muscle spasms or issues.
Jackson began physical therapy about every two weeks since that day. We were shown stretches to do with him at home that needed to be done at each diaper change or 6-8 times a day. I can't even explain how challenging it has been to fit in his physical therapy every day with two parents who work all day.
There were times at his appointments that he would be in tears because the stretches were causing him pain, but anytime I felt close to tears during one of his appointments, his physical therapist would just remind me that compared to many babies and children who come to Physical Therapy at Children's Hospital, we are lucky. Trust me, I see children from all walks of life in the waiting room and walking around the hospital, and I know I should still be a very thankful mommy, and I am. I know that there are plenty of other parents who have to deal with much more pressing medical issues with their children including lifelong ailments, and for that I am thankful that this is supposed to be a temporary issue. The muscle in his neck should eventually stretch out and the flat spot on his head should even out to a large extent.
Since it was painful for Jackson to turn his head away from the stiff muscle, we had to work really hard to prevent him from favoring resting his head towards one side. When most babies were transitioning over to their cribs, Jackson stayed in his Rock-N-Play. We were told that any amount of pressure we could take off the back of his head by elevating him at an angle would help reduce the chance of him getting a flat head.
When babies prefer keeping their heads tilted towards one side, that side can begin to develop a flat spot. Jackson preferred to turn his head away from the sore muscle on the left side of his neck and therefore began to develop a flatter spot on the right back side of his head.
We did the opposite of what most parents do before their child ends up needing a helmet: we held him ALL THE TIME! We carried him, had him sleep on an elevated surface and avoided laying him flat at all costs. If he was in his swing, he was elevated. He slept at a slant in his Rock-N-Play for months past most babies his age. We did his therapy every single day and continued his physical therapy at Children's Hospital every two weeks. We rolled burp cloths and stuffed them in the recommended places in his carseat. We used a special hat that is supposed to help prevent babies from getting flat spots.
And yet, here we are 8 months later, with a helmet. So yes, even though I know that my team of caregivers tried their hardest to prevent this very thing, I know it is the best step to getting rid of that flat spot.
So my kid has a helmet, what's the big deal? Honestly, I am glad we are doing this for our son, because flat spots can cause problems later down the road. Baby's faces can become disproportional, though that part is purely considered "cosmetic". But we are talking about one side of the forehead sticking out more than the other, ears being on noticeably different on the sides of the head, eyes being uneven...and let's just say I was not about to do nothing and let my son have a disproportionate face. As an adult, the jaw can begin to have alignment issues that often lead to surgery.
Basically the Physical therapist, Pediatrician, Neurosurgeon and Helmet specialist all recommended that Jackson have a helmet. The Dr. who measures his head for his helmet agreed with the Neurosurgeon that Jackson's condition put him "on the fence" where his head could possibly change on it's own, but that it could very well not change or get worse as well.
After Jackson's diagnosis of Torticollis, Ross and I researched as much as we could about it. I felt so guilty that the vacuum used during delivery was most likely the cause of all of this. I wished I could have pushed harder, but I went into labor after only getting one hour of sleep, which was one of my biggest fears alongside of having to get a c-section. I ended being an hour away from needing a c-section since the time frame was almost up from having my water broken for so long. I was petrified at the idea of having a c-section with what could be a longer and more painful recovery, but I ended up needing an incision anyways that I could feel since my epidural had worn off. My labor was plenty long and painful for me, (especially since I had an extremely low pain tolerance to begin with). In the end, Jackson's life was in danger so a vacuum became a necessity. So according to our research, this is all most likely the cause of Jackson getting Torticollis.
Having torticollis has also caused Jackson to be behind in pretty much all of his milestones. I had to just laugh though when all my besties were bummed when there kiddos were slow to get teeth and Jackson already had his considering it is the one thing none of us have any control over. But I thought, hey, if this one thing happens before anyone else, at least we have one thing! Ha. It was so hard as a parent to have to watch so many other babies hit their milestones early or even on time, while my little buddy struggled to catch up with his stiff neck and lack of muscle control. It seems silly now, but as a Mamma, I felt like I was failing him. It broke my heart. I just wanted him to be "normal".
It hasn't been easy to have to take him to physical therapy every two weeks and have to take off time at the end of each work day that day in order to take him there. My job has been really supportive with that aspect and I do appreciate that greatly. Though I know there are so many families who struggle with much worse medically or otherwise, it's still hard not to compare Jackson to children his age who are perfectly healthy and able bodied being able to achieve the milestones that Dr.'s like to see at each month marker. It always makes me wish I could spend more time with him helping him achieve all of these milestones along the way.
The night after Jackson's first helmet appointment, Ross and I read a blog post written by a mom who's child had also needed a helmet. What struck a chord with us was when she said that she was so glad that she went through with it for her child because her child's head was fixed, but a friend of her's did not get a helmet and she regretted it because her child's head did not change and her child still has a flat spot well into childhood. Some children will have a much milder case that does not change the shape of their face and their head can repair itself as the child grows.
For us, our son was worth it to try. So why am I bummed about this? Because we worked so hard to avoid it. My biggest fear was how uncomfortable it would be for Jackson to wear it. I also feared people staring, and let me tell you - they do. Every single person we walk by follows us with their head. I don't think most people even realize how bad they are staring, but it drives me crazy.
I went to the mall for the first time with his helmet on and it's almost funny how people feel that they just have to comment on his helmet. Many people will ask what is "wrong" with him. I usually just explain he has a flat spot and it is fixing it. I am surely not going to go into detail. But I hate that part, because that explanation doesn't do any justice for how hard Ross and I have worked to prevent him from having to wear the helmet.
The worst part, though, the helmet cuts into my arm when I rock him to sleep at night and give him a bottle. I can't kiss his head and it's very difficult to kiss his sweet plump cheeks. That part breaks my heart the most. We give him a bath and wash his sweaty hair every single night. We clean out the helmet by wiping it down with rubbing alcohol.
The helmet cannot get wet, so when we took him to the beach he didn't wear it. It makes him extremely hot so we didn't want him to overheat in it either. He can't wear it if he swims, so I enjoy those hours of freedom where I get to see my baby boy fully without the big foam and plastic helmet in the way.
He has done really well adjusting to wearing in though. He slept through the night just fine the first time he had to wear it all night long. It was a week long process of wearing it a couple of hours at a time and then for a nap, and then 23 hours a day except for when he takes a bath or goes swimming.
At his last appointment the Neurosurgeon said his head will be at close to 85% change in about a month if we continue to have him wear it for 23hrs a day.
I am overjoyed that we are seeing an improvement so quickly but I can't wait to take it off. When people come up to me and tell me their stories of how their child or grandchild had to wear helmet and it made their head completely normal after just a couple of months, I get my hopes up that he might not need to wear his for that long. Their stories are encouraging, but it's also nice when people just tell me he's cute and don't mention the helmet at all. ;)
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| Hey, I think this kid looks adorable even with a helmet on! |
