One Year Later: My Thoughts on Isla's Helmet

Isla wore a helmet for brachycephaly for three months when she was a baby.  It has been just over a year since she graduated from her helmet.

I was looking at her head tonight when it was wet in the bathtub and wondering how it compared to those helmet days.  Here is a collage of her pictures from her pre, during and post helmet wearing days.  Week 1 was October 2011, week 6 was November 2011, and week 13 was January 2012.

 I tried to get a picture of her head in the bathtub tonight, but it was hard because she didn't want to sit still.  (We don't have that pink Bumbo seat anymore!).  I definitely think she has lost that triangular shape that we worried about before the helmet.  It looks like a fairly normal shaped head to me!

 Notice how her hair is thinner on top.  The helmet completely covered her head except for a circle that was cut out on top.  Our orthotist told us that it was common for the helmet to cause hair to grow better because it locks in moisture.  When I look at her head, it really looks like her hair is thicker in the areas where the helmet touched and thinner in a perfect circle around the top, where the helmet did not touch.  I don't really know that her thin top hair has anything to do with the helmet or not, but I always wonder.  I'm ready for that hair to start growing though!


So one year later, and I can say that I am definitely, definitely happy that we decided to get a helmet for Isla.  I have come a long way in my thinking since I first found out that Isla might have to wear a helmet.  Her head looks great, and it was a much better process than I ever expected.  Through this blog, I have had contact with several people (strangers) who have been in the process of questioning whether a helmet is a good thing or not.  It has been great to be able to share our story with others and quiet their fears and uncertainties about how their child will be judged in the helmet.

Just for fun, here are a few of my favorite pictures of Isla in her helmet.  There was a time when I said I would only take pictures when she wasn't wearing it.  Silly me!!!  I'm so glad that I took pictures, because that three months was such a short period of time...I barely remember what she looked like wearing it!  She looked pretty cute and happy!

January 16: Good-bye Helmet!!

Isla graduated from her helmet today!!!!!

Well, she technically isn't quite finished with the helmet yet. She will still be wearing it at night for a few more weeks. However, the night time wearing is just a precaution. We don't want her head to regress and flatten out again. Since she will just be wearing it to prevent flattening and not to correct it, in my mind we can say that she graduated from needing its correction anymore!

Her CPI today was 86%. Normal is 83-85%. We are extremely happy with the way her head looks right now. The back is round, the side bulges are gone...there really is no need to keep correcting her head shape because it is now CORRECT!

I am sure I will have more final thoughts on the helmet, but it's too late tonight to form any coherent thoughts. I'll just let the pictures speak for themselves for now:

November 30

It was a big day for Isla today. She had an appointment at Hanger for her second head scan. Finally time to see if that helmet has been doing its job!

It was good news...the helmet is most definitely working!
When we started with the helmet, her CPI (cranial proportion index) was 95%. Normal is between 83-85%. Today, the scan measured her at 89%! That is really, really good for being in the helmet only 6 weeks. Mary (our orthotist and the one who is in charge of all this) seemed very impressed by that.

You can defintiely see a big difference in her head shape. It is more oval shaped and less triangular. Her forhead is not as pointed, the sides are not as wide, and it is definitely rounder in the back. And it has only been 6 weeks!

So now, we will go back for another scan in 5 weeks (January 4). At that point, there is a good chance we could be done with the helmet after only 11 weeks. My goal was to have it off by the time we leave for our Florida vacation in mid-February. To be done with the helmet the first week of January would be so exciting!!!

But, there are a few things that may stop that. One thing Mary suggested to consider was whether Isla is rolling over in her crib at night. Without the helmet, she wants her to be moving off her back at night so that her head will not flatten again. After doing all this with the helmet, regression would be horrible! The problem is: she is still not rolling. She is so very close, but not doing it yet. She's still not a big fan of being on her tummy either. I think it might be a while before she gets to the point where she will roll over and sleep on her tummy.

So, she might still need to keep wearing the helmet past January...not necessarily to reshape her head but to prevent it from getting flat again. Then we run into another problem. She is growing a ton right now (which is why we are getting such good results so quickly). But by January, she will most likely be too big for this helmet. So if we want to continue with a helmet after that, then we will have to get another helmet. I really don't want to pay for another helmet at this point. So we will have some decisions to make in January about what to do next.

And one more concern today: the helmet is causing Isla to have bulges over her ears and what looks like an indentation on her face. It worries me that the helmet is causing these abnormalities because the whole purpose of the helmet is to get rid of any head/facial abnormalities!
Mary told us that the bulges are normal. It is called window edema, and it is caused by fluids that are being pushed around and cause swelling. It should go away after we have had the helmet off for a few weeks. She did do some adjusting of the helmet today, and hopefully that will help the bulges to not get any bigger.

As far as the indent on her face, Mary didn't thing it was anything permanent either. Most likely it is a combination of the way her face was before we started this and the fluids that are swelling in some places and leaving indents in other places. She also did some adjusting of the helmet on that side of her face to hopefully alleviate a little of the pressure there and prevent it from getting worse. The indent looks really obvious in this picture, but in real life I have a hard time seeing it.

Long story short...we are seeing really good results with the helmet. Aside from a few concerns, we are super pleased about the way her head is looking and really happy that we decided to go the helmet route!

October 25

Here are Isla's official "before the helmet" pictures...even though she has been wearing the helmet for 5 days now!

I think it is hard to get a good view of her flat head in a photograph. It seems so much more noticeable to me in person than it does in photos. So I just took a bunch of pictures from several angles to have a few points of view to compare with at the end.

My biggest fear is that we will go through all of this with the helmet, and nothing will change. Really, that would just be awful.

The orthotist says by the 6 week point we should be able to see a visible difference. So that will be our next set of pictures...we shall see if anything changes by then!

(You can also see the yucky rash she has on her face in these pictures. The doctor is going to prescribe us something to use on it, but she wanted to do some research first. Her normal prescription isn't optimal to use with the helmet.)

October 21

Someone is excited about her new helmet!!! (Technically, the helmet is called a cranial band. But there is nothing band-like about it...it is definitely a helmet!)
Isla gets a huge A+ for cooperating with the helmet today. For the first day, she only has to wear it for one hour and then she gets an hour off, then back on for an hour and off for an hour...and so on. She ended up wearing it for several hours at a time already today, because it wasn't bothering her at all. She even took two naps wearing it, and according to her helmet initiation schedule, she doesn't have to sleep with it until Day 4. So she is doing great! She really doesn't seem to notice it at all, except for when we are taking it off or putting it on.

For me, the helmet looks better on than I expected. I was really nervous about seeing her in it for the first time, but it wasn't so bad. It will take some time to get used to seeing her in it. But since she will soon be wearing it every day, 23 hours a day, I'm sure that won't take too long.

One thing I don't like is that it squishes her cheeks and pulls down her eyes. We need to work on adjusting the helmet and getting it to sit straight on her head. I think it is a tad crooked in these pictures and could look a little better with a bit of adjustment. We will go back to the orthotist next week, and she will refit the helmet and cut off more of it around her face. I think it will look even better when there is not so much covering her forehead and sides of her face.Isla made her big public debut tonight at a church staff party. It was a good first outing, because most of the people there already knew about the helmet. We didn't have to explain it to everyone. Tomorrow, we are going to an apple orchard and a pumpkin patch. It will be the first test to see how people in the general public react to her helmet.

It's funny how much my thoughts on the helmet have changed over the past two months. When we first found out about it, I was terrified. I was positive that we wouldn't go out in public with it on and that we would take it off for all pictures. Now, that just seems silly to me! We've already been out in public and taken pictures, and we have only had the helmet for about 9 hours.

I'm trying to be very vocal and open about all of this. More than anything, I just want people to understand what is going on with Isla's head and why we chose to put her in a helmet.(I need to take official "before" pictures that we can use to compare Day 1 with Day ??? at the end. I will do that soon!)

October 12

We went back to Hanger today. They scanned Isla's head again, and she was at 95.8%. At her last scan six weeks ago, she was 94%. Normal is around 83-85%. Those numbers are moving in the wrong direction.

Therefore, we are officially getting the helmet. Next week!!!!

When I first found out about Isla's brachycephaly and the possibility of a helmet, I immediately began searching the internet to find out more about it. I was especially interested in blogs and real life stories about parents with kids in helmets. Reading about how other people have been through the same thing helped me to feel so much better about Isla wearing a helmet.

So, I have tried to be very thorough on this blog about detailing our story. I hope that someone else who is going through the same thing might stumble across this humble little blog and find some encouragement.

For those who are just tuning in, here is a quick recap of what is going on. Isla was born with a flat head. At her two month appointment, the pediatrician confirmed my suspicion that her head was still not growing correctly. She referred us to a physical therapist, who is working with Isla to improve the range of motion in her neck. We had hoped that physical therapy might also help her flat head, but her head has not improved on its own.

Now Isla we will wear a helmet (officially called a cranial band) 23 hours a day for the next 3-8 months. We are really hoping it will only be 3 months, but the orthotist today told us that with brachycephaly (as opposed to the more common plagiocephaly) it can often take longer to correct.

The helmet will look like this, without the Tweety Bird pictures all over it!
Isla's helmet will be light pink. There are all kinds of crazy patterns and pictures and designs out there for these helmets. But I personally think they are a little tacky. I am viewing Isla's helmet as a fashion accessory...therefore it must coordinate with her outfits! We are looking into some hats to go over it, as well as velcro flowers and bows that we can attach to it.

I was really terrified of the helmet when we first learned it was a possibility. But at this point, I am embracing it. It has taken me a while to come to this point, but I really feel like this is what we need to do for her. I am also grateful that this is the biggest problem we are worrying about right now. I know there are far, far, far worse things that can happen to a baby. In the end, I am grateful for a healthy and (mostly) happy little baby!

October 10

I pulled out this jumperoo/activity center thing for Isla to try out today. Her head control has improved drastically over the past couple of weeks (at least I think so), and I thought it was time to give her something new to do.

I think she liked it. She stared intently at all the toys and worked really hard to grab a hold of them. Then she got a little frustrated because she wanted to put everything in her mouth, but the toys don't move off of the base.(If you are sentimental like me and want to go back and look at Audrey's first time in the jumper, you can find that here. We put Audrey in the jumper a few weeks earlier than Isla, but they both seemed to react in about the same way. That's one reason I keep blogging...I love having this record of our daily life and all of our kids' milestones.)

Looking at these pictures, it only confirmed to me that we are making the right decision with this helmet. Sorry if I sound like a broken record about this, but I go back and forth all the time on whether we really "need" to helmet her. I think she is beautiful just as she is, and most of the time I don't notice her head shape much at all.

But then I look at pictures like these, where you can see how it slopes up towards the back and then it's just like a cliff in the back...straight down. In the second picture below, you can see how it is causing her forehead to begin to bulge out a bit in the front.


Daniel talked to a lady tonight who has a flat head. She said she has hated it her whole life and refuses to wear her hair in a ponytail, because she is self conscious about her head shape. It was more confirmation that we are doing the right thing to help re-shape Isla's head now while we still can.

October 7

We introduced Isla to Sophie le giraffe today. (Katy, you should be happy to know that I think the two of them are going to be good friends!)Isla also had her 4 month doctor's appointment today. She weighed in at 13 lbs, 6 oz. (49th percentile) and 24.5 inches long (71st percentile). It's crazy how quickly my skinny little baby turned into a roly poly little thing! Those measurements are nearly identical to Audrey's measurements at 4 months. Isla did not scream nearly as much as Audrey did during her 4 month check up though!

I was anxious for this appointment. First, I wanted to know our pediatrician's opinion on whether Isla needs to get a helmet or not. (Remember, I just want someone to tell me what to do!)

Her response was that she would not have sent us to Hanger so early if she did not think that Isla needed a helmet. She said that Isla was unique in the fact that her head was flat since birth. Because her head grew flat in utero, Dr. Murray was pretty sure from the beginning that Isla would need a helmet to correct it. Therefore she referred us to the specialist at a really young age, believing that the helmet was pretty much inevitable. Her opinion is: if you have the chance to make it better (and insurance is going to pay for it), then why not do it? That is how I've been feeling, but I just needed an "expert" to confirm my thoughts for me.

Here is what her head looks like today...it has changed since the first picture we took two months ago. It looks better to me...a little more uniformly flat across the back and not quite as triangular? Maybe we'll go in next week and her numbers will have improved drastically. If by some chance they do, we will reconsider. But at this point, it is looking like we have officially decided to get the helmet.
I was also curious to see what our pediatrician thought about Isla's head and neck control. I feel like she is behind where she should be in this area. However, the doctor thought she was doing great. She observed Isla sitting up (while supported)and on her tummy, and she thought her head control looked perfect. The one thing Isla didn't want to do was turn her head while on her back, but she never wants to do that. Dr. Murray said the helmet might make it easier for her to turn her head (and consequently learn to roll over). With the helmet and some more physical therapy to make sure she stays on track, she was not concerned one bit about Isla's development. Hearing that was a relief to me!Now it's time to get out the high chair and start feeding her some cereal. She is becoming such a big girl! (Though according to Audrey, Isla is not a big girl. Not yet. Audrey is a big girl. Isla is a big baby....Audrey corrects me on this constantly!)

September 7

Isla had her appointment at Hanger (the company that makes helmets) today. We met with the orthotist who measured her head and gave us an idea of the severity of her brachycephaly. They covered her head with this sock-type thing and then scanned it. I thought she would be really annoyed by that thing, but she did a good job and didn't cry at all. Here is what she looked like getting ready for the scan:
During the scan:And here is what her scan looked like on the computer:The funny thing is...her scan doesn't look all that bad. Daniel, the orthotist, and I all looked at it and were really surprised. The scan shows that it is flat in back and more triangular in shape. But in person, it appears to be much more severe. The orthotist thinks this is because the scan isn't quite measuring her head exactly where it is the flattest. Her head slopes up in the back (which is common with brachycephaly), and she thought that might be throwing off the scan a little bit.

To measure brachycephaly, they use what is called the cranial proportion index (CPI). I don't fully understand how it works, but they use a percentage to determine how proportion the head is. Normal is around 80%. Severe is 100%.

According to Isla's scan, her head measured at 94%. That seems pretty severe to me, but the orthotist assured us she is in the moderate range. Even if the scan isn't quite accurate and her head is worse than it shows, she still thought that Isla would be considered a moderate case. She also said that it is purely a cosmetic concern, in her opinion. ( I guess there are varying opinions about how this could possibly cause medical problems later in life if untreated).

So, basically, it is up to us as to whether we treat (i.e. get a helmet) her or not. We can leave her as she is and hope that her head rounds out on its own. Or we can get her a helmet, which will most definitely lead to a big improvement in the shape of her head.

I really just wanted the orthotist to tell us what to do. She didn't. Rather she repeatedly said that it was our choice whether we treated her or not. How do you know what to do? We don't know what will happen to her head as she grows? It is possible that it may round out and elongate and appear more normal on its own. Ot may stay flat in the back and wide in the front but not affect her forehead or facial features or appearance. I am perfectly fine with either of those options.

However, it might stay flat in the back and then cause problems in her appearance. Her forehead could bulge out more. Her head would most likely get wider and stick out above her ears. It could cause problems with asymmetric facial features, which could lead to eye and jaw problems. The window of opportunity to treat this bascially ends by 12 months. So if we don't do something in the next few months, then there will be nothing that we could do later in life. What if she really starts to look deformed because of this?

So...do we just go ahead with the hassle and expense of the helmet in order to avoid the possibility of future problems? Or do we just hold out and hope that everything will work itself out...or that it won't cause too many noticeable problems...or that she won't grow up and be mad at us for not fixing it when we had the chance?

Right now, the plan is to go back for another scan in 6 weeks. Then we will be able to see if it is improving, getting worse or staying the same. From that point, we will need to make a decision about the helmet.

We asked the orthotist what she would do if it was her own child. She said that if her child were to present with the same scan results and appearance as Isla, she would definitely treat her. I think for now, we agree with her. If we don't see improved results at the next scan, then we will move ahead with the helmet. If it is getting better, then we will re-evaluate and decide what the next step is. At least that is how we feel right now.

Throughout all this, we will continue to meet with our physical therapist. We will also have Isla's 4 month dr's appointment before the scan. I'm hoping to get input from both the therapist and our pediatrician about what they would recommend for us to do. I know that we are the parents, and we are supposed to be in charge. But I don't want to make this decision! I don't want to be a perfectionist who is trying to create a perfect child with a perfectly shaped head. I don't care if her head is a little flat or funny shaped. But I don't want to ignore this and then end up with more serious problems (both cosmetic and medical) later in life. I just don't know!!!!!!

August 18

I meant to post this last night, but I kept falling asleep and couldn't finish it.
On Wednesday, Isla had her second physical therapy appointment. Shannon, her physical therapist, noted improvement in her range of motion and head control. She seemed pleased with that progress. She also seemed optimistic that as her neck and head continue to strengthen her head would round out on its own.
I am not feeling that optimistic. I just don't understand how her sweet little flat head is ever going to round out all by itself. It has not improved in the past 2 1/2 months, it's hard to see how another 2 months will change anything.

Generally, flat heads are caused by neck problems. A baby doesn't move their neck around enough or only moves it in one direction, therefore causing a flat head. With Isla, the therapist seems to think it is the other way around. Because her head is flat, it is harder for her to move her neck all the way to each side. So it is the flat head causing some minor neck problems and not the other way around.

Shannon felt like Isla was on track now though, so we don't have to go back to see her for another two weeks.
In other news, Isla has started sleeping through the night! (At least for the past three nights. I'm fully aware that she could turn me into a liar and wake up every hour tonight.) Last night she slept from 8 pm-6 am without waking up once. It was great! She is a horrible sleeper during the day and will often only take 30 minute cat naps. But she is sleeping at night, so I'm trying not to complain!

Audrey is doing better with sleep. She is generally sleeping from 8 pm-7 am. But she is usually up once or twice a night. When she wakes up, she comes into our room, then we walk her back to her room and she goes back to sleep. It's not too bad. Sometimes she wakes up at 5 am and won't go back to sleep, and that is the only time that we will let her sleep in our bed. I really want her to sleep in her own bed, but when it is 5 am and my choices are to get up with her or to let her sleep with us, I'm going to choose let Audrey sleep with us for a little bit.

August 9

I've been reading a lot about plagiocephaly. I'm probably spending way too much time thinking about this, but I like to be well-educated. It's actually been really comforting. There are all kinds of plagio support groups and websites out there. I enjoy reading other people's stories about this process and what to expect. In all of my reading, I learned about the Noggin Nest (the hot pink thing in the picture above). It's basically just a pillow with a hole cut out of it, which helps to take the pressure off the back of the head when babies are on their backs. I found one at our Babies R Us this morning and decided to try it out. All of the reviews I read about it were positive. Everyone kept saying how their baby's head was so flat, but after a few weeks of using this pillow, it was nice and round! I'm not expecting results like that, but if we can at least prevent her head from getting any worse, I will be happy.

I've been stressing out about putting Isla in her carseat or swing or bouncy seat because I don't want to put any unnecessary pressure on her head. But the truth is, she is going to have to be in those things at least a little bit every day. So we're going to try out this pillow with all those things and see what happens.

I'm also going to start using the baby carrier more out in public and even around the house. Anything we can do to get her off her back will hopefully help her head improve naturally without the need for a helmet. It will be easier when she is able to hold her head up and sit up.

If we do end up with a helmet, I found this website tonight. This lady makes hats that cover up the helmet completely! She also sells velcro bows and flowers that you can attach to the helmet. I love that Isla could still wear bows even with a helmet! There are a lot of tacky looking helmets out there, but I can guarantee that Isla's helmet (if she needs one) would be stylish!

We have our first physical therapy appointment in the morning. I'm curious to see what they do with her and what they tell us. Her appointment with the helmet specialist is not until September 7, so we won't know much more about what will happen next until then.

August 5, Part 1

I have two long topics for yesterday, so I'm splitting this into two parts.

Today, Isla had her two month doctor's appointment. At 9 1/2 weeks, she weighed 10 lbs, 2 oz (33%), and she was 22.5 inches long (67%). She has totally shot up on the growth charts compared to her last visit! Even though I still feel like she should be eating more at each feeding, she is growing and is healthy...so that's what important!

That was the good news from the appointment. The bad news did not come as a surprise to me, but it was still not fun news to hear.

I have been worried about Isla's head shape since she was born. Her head is very flat in the back, and it is kind of crooked and funky in the front and top. It is not a normal head shape. It's normal for newborns to have strange shaped heads, so I was hoping as her head grew, it would grow into a more normal shape. But it hasn't. So, the doctor confirmed my suspicions that this is a problem. Fortunately, it is only a cosmetic problem. The doctor didn't see anything to indicate a problem with brain growth or anything like that. But, it is a cosmetic problem that needs to be fixed or she could really start to look kind of funny. Because the back of her head is so flat, it pushes everything up towards the front and can even start to affect the placement of her ears and the shape of her jaw.

Our first course of treatment will be physical therapy. I don't really know what they will do in physical therapy, but I'm guessing it will involve lots of tummy time exercises to help strengthen her neck muscles and get her off her back. The frustrating thing is that I have been much more conscious about doing tummy time with Isla and watching the amount of time she spends in a carseat or swing than I was with Audrey...probably because her head was flat from the start. I feel like I have been taking great care to do everything we can to prevent a flat head, yet her head is still flat.

I did read that one of the causes of this condition (called plagiocephaly) is restrictive intrauterine positioning. I wonder if this contributed to Isla's flat head. The doctors were so concerned about my small belly and Isla's growth. In the ultrasounds, she was always squashed over to one side. There's no way to know, and it really doesn't matter. I just wonder if her position in the womb may have been part of the cause for her flat head.
Now, here is where the bad news begins. Our doctor (our pediatrician, we haven't seen the specialist yet) thinks there is a pretty good chance that she will need to wear a helmet. I am TERRIFIED of the helmet. Ever since I first learned that helmets were a treatment for this condition, I have been afraid that one of my kids would have to wear a helmet. It is a completely superficial and selfish fear, but it is a fear nonetheless.

When people see a kid in a helmet (myself included), they don't think to themselves, "Aw, what a cute little baby." They may think, "Poor baby, has to wear a helmet." Or maybe even, "what is wrong with that child?" Helmets in our society seem to be associated with mental retardation, even though that is not the case at all when they are used with babies. Regardless, people see the helmet and not the baby. I don't want people to judge my baby or think differently about her just because she has to wear a helmet. I am so afraid of what people will think of her, even though I know it doesn't matter what other people think of her. It still bothers me. A lot.

So, with the helmet, she would have to wear it every day, 23 hours a day for months. Some kids wear helmets for up to 18 months, but I would hope she would not need one for that long. I'm already plotting that we will do most of our public outings and pictures during that one hour when the helmet is off!
I'm probably getting ahead of myself a little bit, as we still do not definitely know if she needs a helmet. We will meet with a specialist who will measure her head and give us an idea of how severe her condition is. Then she will do physical therapy, and they will continue to measure her head and watch for improvement. Sometimes, physical therapy is enough to fix the problem. Oh, how I hope and pray that will be the case for Isla!

If not, wearing a helmet will not be the end of the world. I have a feeling there may be some important life lessons for me to learn about superficiality and judging people by the way they look. But I would really prefer to learn those lessons without having to subject my daughter to months of helmet wearing!