My kid likes hats... so mind your business

People can be so rude. Is it just me, or does it seem as though Moms are the favorite target of the general public- taking shots at us every chance they can? It's as if we don't think we are inept enough, clearly we need constant reminders to confirm our belief that we are inadequate. What you may think is an innocent comment like, "Oh, it looks like those pants are getting a little small on him" we interpret that as, "Look at your poor kid. Don't you have any money for new pants? Yours seem to fit you just fine. You know this is going to affect him for the rest of his life? The two-tenths of an inch of his exposed skin, due to insufficient coverage of the ill-fitting pants you stuffed him into, is subject to polluted air, ultraviolet light and insect attacks. You're a sad excuse for a mother. I could do a much better job." Really. Your benign comment just sent about 75% of us into a tailspin of guilt. It seems it's always open-season on parents, and there sure are a lot of hunters out there.

But, before I digress into a verbal assault against rude people, let me get to the meat and potatoes of this post-- I've been sitting on it for 2 years. Finally, I'm going to share. Only a handful of people know about what I'm going to write about.

Hats.

It's rare that you will see a picture of my son without a hat on. Rare.

Why? Well, in theory that shouldn't be anyone's business; most people should just assume that Toby likes to wear them. Perhaps that's partly true. However, after some recent comments and an annoying experience, I feel compelled to finally post this.

Last month I brought Toby to a Christmas play at a local theater. It was a frigid day. We were running late. There was no parking. (You know how this story goes... especially mothers of squirmy toddlers who like to do everything themselves.) I found a spot about 6 blocks from the theater and I had to run with him. Run with him squirming the whole way; fighting me to walk on an icy sidewalk in busy downtown. Over the course of my 6-block sprint, the hat Toby was wearing slipped down his forehead. When we arrived at the theater we were both wind-blown and I was sweaty and frazzled. As I walked up to an usher, a random woman approached me and said, "His hat is over his eyes. He can't even see!" Then looking at the person she was with she added, "This poor little boy's hat is way too big for him."

I looked at her and said absolutely nothing. She averted her eyes and slowly backed away. There wasn't a mirror nearby but I can only imagine what my face silently communicated to her. Did I feel badly that I hadn't noticed the hat over his eyes? Kinda. He obviously wasn't complaining. He has two hands, he could have pulled his hat off or asked me to do it. But her comment made me feel badly, on so many levels. On a personal level because I am so sensitive about Toby and his hats.

When I was about 32 weeks pregnant, I was going in for weekly ultrasounds because I had a high risk pregnancy due to gestational diabetes. At my 32-week appointment the ultrasound (U/S) technician said, off-handed, "Your baby has a big head." Of course, to any expectant parent, these statements aren't taken lightly. One, because we worry about things that are out of our control and, two, because I was aware of how children usually exit the body. So, hearing my child had a big head certainly caused me to lose some shut-eye.

At my 33-week appointment a different U/S technician said the same thing, but took it a step further and "measured" his noggin. His head was measuring 8-weeks ahead of schedule. I didn't just take it with a grain of salt, I inquired further. The tech said it was, "probably nothing to worry about, it could just be his position and they'll measure it at birth." That calmed my fears. Somewhat.

At birth, his head was a little misshapen from sitting in the birth canal for so long, but wasn't so big that the doctor had any concerns. However, early in his infant life his head was always at the 100th percentile. Well, really, over 100% but the graph just didn't go that high. When he was 2-months-old his head was measuring the size of a 12-month-old. Our doctor was concerned enough to start having him come to the office for bi-weekly measurements to track his head growth. At each appointment, though his length or weight barely changed, his head continued to grow. It was terrifying.

Our pediatrician is phenomenal. I could not have picked a better doctor. She gives me her undivided attention and I never feel like I have to rush asking questions, nor have I ever felt that my questions were stupid. So, being a fantastic pediatrician, after Toby's head continued to grow, she referred us to a neurologist to have an ultrasound. Toby was 6.5-months-old. His appointment was on a Wednesday. My favorite day of the week. Go figure.

The ultrasound was just like any other ultrasound. They don't do anything special for babies. They just rubbed that wand all over his lubed up head and I sang to him the whole time. We left the office with no news but figured no news was good news. The tech told us she would send the results to the neurologist and the neurologist would call our doctor if there was any cause for concern. We knew our doctor wasn't in on Wednesdays, so we figured if we heard anything it would be the next day. So, we went home, we fed Toby pumpkin for the first time and we played with him. Within 2 hours of leaving the neurologist's office, our pediatrician called... and my heart dropped. We knew our doctor didn't work on Wednesdays so, if she was calling us, she's wasn't calling for a good reason.

"The radiologist looked at the ultrasound and has determined that Toby has hydrocephalus."


My heart dropped. I knew exactly what this meant. Not just because I asked Dr. Google what a "big head in infancy" meant, (which I did) but also because I went to elementary school with a kid who had hydrocephalus. He died a few years ago. He was confined to a wheelchair his entire life. Is that what was going to eventually happen to my son?

"It's not something to truly worry about just yet. It's 'communicating hydrocephalus' in the exterior part of the ventricles. So, it just means the cerebrospinal fluid is not reabsorbing like it should..."

And I silently finished what I imagined would be the last part of her statement "so the fluid is going to put pressure on your kid's brain and his head is going to continue to grow until we can find a way to get the fluid out."

I asked what we were going to do and she said we were just going to monitor it for the next 6 months to see if any action would be necessary. I didn't like this answer and all of a sudden I didn't like my doctor anymore, either. She was going to hang up the phone and enjoy the rest of her day off with her two perfect children and I was going to stare at my son and his enormous head. Yes, we had been worrying about his head, DAILY, for the past 4 months, but this added a whole new level to the worry. This had a name.

What did I do? Was it because of my diabetes? Was it the medication I took for my diabetes? Was it because I slipped on the ice when I was pregnant because I was too impatient to wait for Aaron to fill the bird feeders and I insisted on doing it myself? What does this mean? Will it affect him? Will he need a wheelchair, or will he be fine and just have a giant bobble head? Will kids make fun of him? And then I googled pictures of children with hydrocephalus and I threw up.

About an hour later I took off running. I did the only thing I could. The one thing I am really good at. I researched. Before the night was through I had found several scholarly peer-reviewed articles on hydrocephalus of infancy. I contacted the head of the New England Hydrocephalus Association and I had articles reserved through inter-library loans. I lost myself in books, papers and articles. I read about shunts and shunt failure, delayed development with children with hydrocephalus, and early intervention (EI) services. I learned how terrible head trauma could be to a person with hydrocephalus and any bumps/falls should really be prevented. I enrolled my son in baby sign language classes to start the very next week. I was NOT going to let this affect him any more than it had to. I put a hat on Toby.

The following Monday I called my doctor and told her I wanted him evaluated for EI. She tried her best to calm my fears and state that it wasn't the worst type of hydrocephalus, that sometimes it will resolve itself, and only sometimes is a shunt required... she stated that we would continue to monitor and measure his head for the next 6 months and then take action if we needed.

I hated her even more now. I was not willing to negotiate 6 months of my child's development to "wait and see" if it was the right thing to do. I grabbed all the research off my desk and drove to her office to show it to her. She was with a patient. I had to leave all my notes and highlighted articles with the front desk.

He was behind. I knew this. He didn't start rolling over until he was 7-months-old. His head was huge. He could barely lift it. And so, from that point forward, I put him in hats. Not because I was self-conscious about the appearance of his head but, because it was the only thing I could do to feel a fraction less helpless. IF he was going to bump his head (which would have been virtually impossible because I was hovering over him non-stop) I was at least going to give him the benefit of a small cushion around his noggin.

The next day my doctor called me. The first words out of her mouth were "Okay. Let's talk about this. I read all your articles. The sooner we figure this out, the better." Immediately, I loved her again. She went on to tell me that she spoke with a renowned pediatric neurologist at Dartmouth Hitchcock in Lebanon. She emailed him the slides of Toby's ultrasound. They talked during her entire lunch break and he really thought Toby should be seen. She scheduled us for an MRI and our appointment was in April. It was the soonest she could get. It was four months away. As soon as she hung up, I did what any totally insane diligent parent would do. I began hounding the scheduling department at Dartmouth Hitchcock. Multiple times per day. It only took 3 days until they called back and said they had a cancellation; we could be seen January 8. Whether they made the appointment to silence me, or because they truly had a cancellation, I didn't care. We were going in less than a month.

In the meantime, we went though the motions of life. We read everything. I fell asleep in front of the computer and I had a really hard time not feeling terrified and guilty when I looked at my son. I worked with him using activities I knew early interventionists would use, I hovered over him ready to pounce should he come close to bumping his head, and he wore a hat. Every.single.day. He wore a hat.

When his appointment day came I was sick to my stomach. We were going to find out exactly what we were looking at, if any damage had been done to his brain, how much pressure was building up in his skull, and likely whether or not he was a candidate for a shunt.

Honestly, the ride up North was a blur. He had to be seen by a couple of nurses and then we had to go into the area where MRIs were done. The waiting room was full of adult patients; no children or infants. Finally, we were called and we had to go into a changing room where we had to put a hospital gown on our son. I remember changing him into this little gown thinking it was terrible that they even had to make gowns in this size. When I brought him out of the room Aaron asked me (because he knows I like to document everything) if I wanted him to take a picture of Toby in his hospital gown. I shook my head. I knew I would never forget what he looked like in that gown; I didn't need a picture.

We had previously discussed that we would like to decline sedation for the MRI if we could, though we were willing to do it if it was necessary. He was having a short MRI, only about 20 minutes long, so they were willing to try it without sedation. He would need to have his head restrained BUT they would let me go in with him. What I didn't understand was they meant I could go into the machine with him. I wouldn't be able to put my hands near his face but I could go in that tiny little tube with our son.

Never in my life have I been particularly good at holding a plank, but for this day, I was. For twenty minutes I held my body almost entirely on top of his, much like I was doing a push up on top of him, while they took scans of his brain. It was dimly lit. It was very loud. And it was scary. I talked to him the whole time, I made funny faces, and I cried. He smiled and didn't move a muscle. They got every slide they needed.

About an hour later we were called into the doctor's office and we met with Dr. Bauer. He was brilliant, amazing, and he was soothing. He told us what we never expected to hear. That there was absolutely nothing wrong with our child. He diagnosed Toby with Macrocephaly of Infancy. In other words, our child just has a really big head. Like, really big. He saw nothing that was out of the ordinary. He showed us Toby's brain and all its ventricles. He showed us the area of his skull that contained extra fluid, which his body put there to cushion the brain against all the extra space created by his giant noggin. He told us that his brain is big (that made me happy) and that the space would most likely resolve during his first 5 years of life. He told us our kid would just have a big noggin. Period. That was it. I wanted to hug this man. I actually think I may have.

So, that was 2 years ago. Toby is developmentally on goal now. While he rolled over really late and walked really late it was because the poor thing had a cinder block of a head to lift. The growth of his skull has slowed, although he's still off the curve... and he loves to wear hats. He got used to them. I can't get him out of the house without one. Sadly, because his head is so large, he doesn't fit in most toddler hats. Most of his hats are "youth sized" and some are "adult sized." It is nearly impossible to find a hat that will fit him nicely. Although sometimes I have luck with 4T, usually I just go to the youth section. You know, hats that fit 11 year-olds barely fit my 2.5 year old. And hats that fit most 2 year-olds look like a yarmulke on my kid.

So, if you see my kid wearing a hat that just barely fits, or is way too big, don't judge. And when you say "Jeez, is there even a picture of your kid without a hat on?" the answer is no. There probably isn't. I wish it didn't have to be that way. I wish I didn't lose the first few months of his life to incredible worry. But, if the only price I pay of that is him (and us) being attached to hats, then so be it. You're welcome to mind your own damn business. Further, I really don't need to hear your "theory" that "hats can cause premature baldness." Because, really? Have you met my husband? I have little hope for Toby having a luxurious mane much past his third decade.

In all of this, I realize how lucky we are that we "lost" only about six months to worry and "assumed illness." There are parents out there that get terrible news every single day. Parents that lose days, months, or a lifetime to worry (or worse.) I am so grateful that my son is healthy and I will buy him any hat he wants.

While there is no proven correlation between head size and intelligence (believe me, I've researched everywhere) I still think he's brilliant. And I think he's absolutely adorable. But I don't tell him that too much. I don't want to make his head any bigger than it already is ;)