brachycephaly

i'm one of those rare people who actually likes tom cruise. i think he's a great actor. i loved risky business (and probably wore out the VCR in the rebecca de mornay scenes as a 15 year old), liked top gun, cocktail, LOVED rain man, all the mission impossible movies, magnolia, jerry maguire, minority report, and even war of the worlds. however, one of my personal favorites is vanilla sky. if you haven't seen it, put it on your rainy friday nite list.

the movie is a little dark, which typically isn't my cup of tea. but you get to see some cameron diaz skin, which helps.

(be warned, tonight's blog entry will be a long one....that's what she said...with not a ton of ha has. if you're not a parent, probably not the best blog entry to read. please come back later.)

without giving too much away, in the movie, cruise is a very wealthy businessman who gets in an accident and his face gets really messed up. he has painful surgery after painful surgery and there is a scene, where he is interviewing about a dozen of the top surgeons in the facial reconstruction field, and the doctors are giving him a bunch of medical gibberish. however, tom has done his homework, and is able to ask very medically detailed questions back to the doctors. here's an excerpt:

doctor: The cranial structure was based on 30 pins...and fastened by micro-panels and bits of bone from the mandible. It appears the cartilage graphs have maintained your cheek structure. Unfortunately, because you were in a coma...

cruise: Is that the procedure for allbilateral periorbital hematomas...in a LeFort Three fracture of a comatose patient?

doctor: In a LeFort Three?...You do your best.

cruise: Absolutely.

docotr: The potential for intracranial brain damage was too great.

cruise: Beyond the cheek grafts, Dr. Pomeranz...are the pins fastened with any kind of aluminum which could ionize...and cause that pressure in my head?

anyway, it goes on and on. i love the scene, and it loosely reminds me of the seinfeld episode where jerry is getting screwed over by the mechanic:

Jerry: Hello? Yeah, this is Jerry Seinfeld. What? Twenty-eight hundred dollars?!! That's the estimate on my car?!! No, don't even do anything. I'm gonna think about it. Okay, bye.

George: What's to think about? If Putty says it's what it is, it's what it is. He's not gonna cheat you.

Jerry: Except that it's not Putty.

George: What happened to Putty?

Jerry: Eh, we had a little fight about the move. I took her to this other place. I think they might be trying to screw me.

George: Well, of course they're trying to screw you. What do you think? That's what they do. They can make up anything. Nobody knows. "By the way, you need a new Johnson rod in there." "Oh, a Johnson rod. Yeah, well, you better put one of those on."

i love that, so much truth in that.

ANYway, to tonight's topic. jack has brachycephaly, a form of plagiocephaly, which is a flattening of the back of the skull. as informative as the web is sometimes, when it comes to health, especially that of your child, you google the fuck out of whatever the issue might be. sometimes i just have to stop myself and convince myself that i've read everything i can read about it.

allow myself to introduce.....myself.

jack went through a pretty vigorous labor (see the big day, a live blog from his day of birth), and kelly was in labor for 14 hours. jack was stuck during delivery and spent a couple hours being rocked back and forth around kelly's pelvic bone. the result was some flatness on the back of his head, which the doctors said was normal and would fix itself over time. it was purely cosmetic, and couldn't harm his brain or anything like that.

another increasingly common reason that some babies develop a flat spot is that they spend so much time on their back. starting in the early '90s, parents were told to put their babies to sleep on their back to reduce the risk of SIDS. while this advice may have saved thousands of babies' lives, experts have also noted a fivefold increase in the incidence of misshapen heads since then.

so for the first 4 months of jack's life, we did everything we could that the doctor told us to do. tummy time, propping rolled up towels in his crib under his head to point it to the side, several different ramps...but no matter what we did, he found a way of squirming out of it and would always wind up on his back. jack refused to sleep on his side, despite all our efforts.

by the time he was 6 months, the flatness was still very pronounced. we asked the pediatrician what he thought and he said that it was "mild" and that 9 out of 10 babies' heads will "round themselves out."

a baby's skull is not closed together to allow room for the brain to grow, which means that the separate plates of the skull can move around, changing the shape of the baby's head. once the baby is about 15 months, the plates have come together and basically determined the final shape of his head. at 6 months, the gaps between the frontal and the parietal bones (the coronal sutures and anterior fontanelle) have a wider gap (same with the posterior fontanelle). the shape of the head is pretty easy to manipulate, and you can actually feel the two fonanelles (soft spots) on the front and back of the head (and it's pretty weird to touch.)


as the baby gets older, the sutures start to close and it's more difficult to shape the head (in terms of time).

so at the 6 months mark, we had a decision to make. go with the 90% shot that his head will right itself, or get him a "helmet", which is actually a 6-oz device consisting of an outer plastic shell with a foam lining that applies mild pressure to jack's head to shape it correctly.

the kicker was, if we waited, and it didn't correct itself, he would need to wear the helmet longer and the results may not be as good as if we started at the 6 month mark.

we weighed our options, and went with the 90% shot.

through months 7, 8, and 9, jack was now sleeping on his side, which was great. his head seemed to be getting better, we told ourselves. at his 9 month checkup, about 3 weeks ago, the pediatrician asked us how we thought his head looked. we told him we thought it was looking better, and he replied with, "i think it looks really bad, in fact, i haven't seen a head this bad in 5 years."

awesome. thanks for the bedside manner (honestly, i'll take the straight shooter all day.) there really wasn't any decision at this point. he strongly recommended we get jack a helmet. now i'm pissed. more upset than pissed. if we had gotten the helmet at month 6, he probably would only have needed to wear it for 6-7 weeks. now we were looking at potentially months (according to my research.)

so, off to cranial tech in paramus, NJ for our consultation. we walk in and in the waiting room are 3 babies with helmets on. all the babies are young, between 4 and 6 months. they're in strollers, and jack is bouncing on my knee shaking his rattle and making raspberries. the difference between 5 months and 9 months is astounding. it was weird becuase i felt like jack was left out because he was the only one without a helmet on. we started talking to the other parents and learned that they have to come in every week for helmet adjustments, becuase the babies' heads continue to grow. makes sense.

paramus is an an hour and 10 minutes away from our house....awesome, but the absolute least of my concern.

during the consultation, they first take a series of pictures with jack facing forward, sideways, and lying down. since jack is the best fucking baby in the world, and RARELY cries, he takes it in stride and is done in 4 of the allotted 30 minutes. the techinicians are impressed with his calm demeanor, and i smile proudly.

however, that means 26 minutes of hanging out in another room to wait for the next doctor. she finally walks in, and explains the next step. the are going to have to pull a stocking over jack's head (like he's going to rob a bank), and then take him to this giant 3D camera to take a series of CAT-scan type pics...pictured here:


he didn't cry and he didn't fuss. again, i smiled proudly. fuck, if that was me, I would have been freaking out....

so they take all these 3D images and show us the results on the monitor. we are ushered back to our room and we wait again for the doctor. she comes back with the results. she mesaures several different points on his head, including the big one (which i was waiting for based on my web research.) that is, the ratio of the distance between the middle of his forehead, to the center of the back of his head....DIVIDED by, the disatnce horizonatlly from one ear to the other. an average baby should be about 0.78. jack was 1.02. as most you know, i live and die by numbers, and LOVE the fact that we can quantify the results of the helmet.

the doctor says, not condescendingly at all, "i'm sure you guys don't know what a standard deviation is but...". i respond in the least arrogant manner possible, "actually, i do. i need the mean and the standard deviations."

she shows me the chart. with the mean at 0.78, the standard deviation was 0.06. which means that jack was between 3 and 4 standard devaiations off mean. the chart is not quite a standard deviation, but it put jack in the moderate to severe case.

i punched the doctor in the face and yelled, "WHY?!"

i mean, i asked the doctor how his head compared to most she saw. what about his age? what's the probability that the helmet will fix a 3-4 standard deviation for a 9.5 month old? how long will he have to wear it? will the posterior fontanelle close before the helmet fixes the lambdoid suture (channeling tom cruise)? i'm fucking peppering her with questions, and she answers them all professionally and kindly and i quickly realize that i'm not the first concerned and upset parent going through this.

she tells us that he'll have to wear the helmet for 3-4 months, 23 hours per day.

i'll repeat that.

she tells us that he'll have to wear the helmet for 3-4 months, 23 hours per day. the images they took will be sent to their facility in AZ and the helmet will arrive in two weeks, on april 30.

at this point, all kelly and i want is the helmet on him. every day that goes by, those skeletal sutures are closing more and more. april 30 comes and we head back to cranial tech. again, more babies in the waiting room with their helmets, there for their adjustments.

the doctor comes out holding the helmet. my heart sinks. it's become a reality. kelly feels the same way. but it's okay, he'll never know. it's 6 oz.

she takes us in the back and let's jack hold the helmet. he is on the floor, playing with toys. she looks at him with a big smile, and puts the helmet on him like it's fun. he hardly notices and continues to play with his toys. she instructs us to hang out for about 15 minutes to see how he adjusts to it, seen here:


she does a series of tests and takes the helmet off to go make some adjustments. she comes back with the final product and gives us the care instructions. for the first 2 days, he wears it for 3-4 hours, after which, we remove it and check for any redness, which is normal. the redness should go away within the hour, and then the helmet goes back on. if the redness lasts longer than an hour, call them immediately. also, for the first three days, sweating under the helmet will be excessive, but that's normal. she tells us to come back in a week, on may 5, to check progress. then after that, every two weeks for an adjustment (unlike every 1 week for younger babies.)

as we leave, we walk through the waiting room and see 3 babies with helmets. now it feels good becuase jack has one too, and we actually run into a friend of ours who is there with her baby. the first thing i note is that i need to get him stickers for his helmet. in the waiting room, i start chatting with a mom who is there with her triplets, two of whom have a helmet. we exchange data about our babies and when she finds out that jack just got his helmet, she says, "good luck tonight...it's going to be tough."

we bring jack home, follow the instructions regarding 3-4 hours, the cleaning with alcohol, the angles, the fit, the strap, etc. he gets his dinner, his bath, he nurses, and gets put down. the first night was rough. he would wake up crying, sometimes grabbing his head. my first instinct was to rip the fucking helmet off, but i knew i had to keep it on. we took turns holding and rocking him back to sleep. it fucking pulled at our heart strings.

the second day was a little better and the redness only lasted 15 minutes or so. he didn't seem to even notice the helmet. the 2nd night was a little better as he started to get used to it.

on the third day, saturday, something happened that killed us. during his fucking 1 hour break during bath time, we noticed that he was super happy to have his helmet off. we finished bathing him, got him in his PJs and sleepsack, nursed him, and started to get him ready for bed. at the one hour mark, i grabbed the helmet and brought it over to him. jack looked at it and his demeanor immediately changed. he fucking KNEW what was going on and after i put his helmet on, he became sad and just hung his head......ugh......fucking ugh.

sunday. this was jack's first day out in public. the three of us head to the diner and kind of mentally prepare ourselves for the stares that i'm sure we would get. we walk into the diner, and this 20-something chick behind the counter says, and i quote:

counter bitch: i hope that that is just for safety and that there's nothing wrong with him...

we were both stumped. i didn't even know how to respond. who would ask such a thing. be both spat out some response about his skull and that he's "normal" and that it's helping re-shape his head, and she tells us that she will try to "find us a table in the back out of the way."

she grabs two menus and instructs us to follow her. as we're speechlessly walking through the packed diner, me holding jack in my right arm, EVERYone is staring at us like we're EF fucking hutton. it was awful, there is no other word for it. awful. she seats us in the back room, next to the "employees only" door, where the A/C didn't seem to be working. a table of 8 women were in the room and stared at us as we setup jack in his highchair with his toys. i wanted to scream at them, my blood was boiling.

a woman and her 7 year old come in and the 7 year old stops 2 feet from jack and just stares at him, along with her mother. i made a mental note to get jack a sticker for his helmet that says, "stop staring at me you fucking round-head." we did our best to ignore everyone and enjoy our lunch. translation: we wolfed down our lunch and got the fuck out of there, having to endure the stares again on the way out.

if anything, this has given me a shitload of perspective. 6 months ago, if i saw a baby in a helmet, i would probably be staring too, wondering what was wrong with him or her. jack is a normal kid with a flatspot on the back of his head. he still loves to makes a mess when he eats:


and loves polar cub ice cream (who doesn't.)


5 days down, 115 to go.