I’ve been putting off this post for a long time. I don’t want to write it. But now it’s “for real” so here it is…

Bailey’s getting a helmet.

Bailey (and Brooke, too, but to a lesser extent) have plagiocephaly, also known as “Flattened Head Syndrome.”

What?

Plagiocephaly, when part of the head is flattened, causing it to be assymetrical. With Bailey the flat spot is at the back/side of her head.

How?

Often times it starts in utero. It’s particularly common with twins since room is cramped. My babies, in particular, were at risk because they were head down almost throughout the entirety of my pregnancy. Premature babies (like mine) are also at greater risk. That’s because they are born early so their skull is even softer and more malleable than a typical newborns’, plus the time spent in the NICU is largely spent laying on their back without movement because their health concerns require that they not be frequently moved about as a full-term newborn might be. Twins are also at larger risk because they may spend more time laying down than a single baby. I’ve been mindful to avoid this (obviously I want to hold and love on my children as much as possible!!!!), but sometimes its unavoidable. An example is during feeding if I’m by myself. With a single baby you would pick it up to feed it. With twins, I’ve often had to resort to putting them in their carseats so I can feed both at one time. And, lastly, incidence of plagiocephaly has increased in all babies now that doctors are recommending to have infants sleep on their backs rather than their stomachs as a way to reduce SIDS. Since newborns sleep for many hours a day, that’s a lot of time to be spending on the back of their heads!

Why?

As you can see, above, we had a lot of factors stacked against us that made our babies more likely to develop plagiocephaly. We’ve tried everything in our power to prevent this from happening (I noticed the flat spot on Bailey’s head months ago and have been seeing our pediatrician regularly for “head checks” and to discuss progress). We’ve done neck exercises and repositioning since Bailey prefers looking toward the left (her right). We’ve tried to keep her off her head as much as possible:  by holding her, doing baby-wearing, practicing sitting upright and standing, having tons of tummy time, etc etc etc. It just didn’t work for us. I know there is some criticism out there that parents of babies with plagiocephaly are “bad” parents – the misconception is that the parents just leave their children laying down all the time without ever being held. Although I can’t speak for anyone else (though my gut reaction is that would have to be a minority!!), I can PROMISE that’s not the case with us. Chris and I have been working diligently with the girls literally for months to curb the flattening of their heads and try to reverse it as much as possible. As I’ve mentioned – Brooke has it too, to a lesser extent. So we’ve seen progress with Brooke. But our best efforts haven’t been enough to help Bailey.

What Now?

We have an appointment to meet with a specialist who will take lots of pictures and head measurements. Our pediatrician wanted this to be done ASAP, but with the upcoming holidays the first available appointment wasn’t until January 4th. It will probably be a couple weeks after that until we get the helmet in (they’re all tailor-made specifically for the individual), and then we’ll have the fitting and have weekly follow-up appointments for adjustments. It’s kind of like braces….but for your head/skull!

So What?

I hate it. Everything I’ve read says its much harder for parents than for babies. The first week or 2 takes some adjustment for babies, but then they hardly even notice the helmet. But its not as easy for parents. My biggest problem is the misconception about babies with helmets. I, myself, had mistakingly believed that babies with helmets must have some sort of mental handicap. I know a large majority of people out there think the same thing. I don’t have a problem with babies who have mental handicaps. I have a problem with people treating my baby like she has a mental handicap. Mainly, this is due to a self-fulfilling prophecy (which has been heavily researched in psychology) indicating that when you treat someone a certain way, their behavior tends to manifest whatever had been expected. If you treat someone like they’re mentally retarded, they will act like they are mentally retarded (and I’m using this word in the clinical sense – not as a demeaning label).

Since she’s still an infant and most people interacting with her will know that she has plagiocephaly, I’m hoping this won’t be a big problem. I’m also trying to focus on the positives. This helmet thing – its all aesthetic. We are SO SO SO lucky that we have 2 happy, healthy baby girls – especially after their very early arrival into the world and month long stay in the NICU! We are beyond blessed with their amazing progress and development and they’re hitting all their milestones according to their adjusted age (and even some milestones according to their actual age!)

How Long?

We won’t know for sure until we see the specialist, but our pediatrician believes it will only be between 2-4 months. This is the great news!  I was anticipating a much longer time, so I’m just crossing my fingers that its on the shorter end and that everything works out perfectly.

You’re so vain!

Not really. I know I said it was all aesthetics and, to a large extent, that’s true. However, Bailey’s flat spot is so pronounced that it has actually caused some asymmetry in her face. It could affect her down the road if she needs glasses; “normal” bicycle helmets would not fit her properly (and would, therefore, be unsafe when the time comes that she needs one); and there’s simply not enough research yet to indicate what happens with cognitive functioning if part of the skull is restricting brain growth. There’s the potential that it could impact hemispheric growth and development. Who knows!?

And, of course, no one wants a flat head. So, yes. Some of it is vanity.

So prepare yourself. By this time next month (barring any complications) it will be very easy for you to tell Brooke and Bailey apart in photos. Bailey will be sporting a fancy new helmet in all her photos! : )

Advertisements