Our experience with plagiocephaly, torticollis, and a helmet

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One of my twins, Alex, was born with torticollis, a condition in which the head is tilted to one side. In Alex’s case, the muscles on one side of his neck did not develop correctly in utero and he could not turn his head to the left. Torticollis is more common in multiples because they are so cramped in utero.  By the time Alex was two months old, the entire right side of his face was flat because he always had his head turned one direction. We learned preemies have softer heads when born, and are more prone to plagiocephaly (head deformation). 

Our doctor told us Alex would outgrow the torticollis. This is absolutely false. After researching it and talking to doctor friends, we got a second opinion and a referral to physical therapy. The majority of torticollis cases can be resolved with simple stretching exercises. Despite the physical therapy, increased amounts of tummy time, and changes in sleeping position, Alex’s head did not improve. Our pediatrician told us Alex’s head would eventually round out, but every month Alex’s head was getting more deformed. By 6 months, his facial recession was noticable and one half of his face was still flat.

After reviewing a plagiocephaly severity assessment chart (found here) with our physical therapist, we realized Alex’s head would be classified extreme. Most distressing was that his forehead recession was extreme – one half of his face and his forehead protruded an inch farther than the other side.  We got referred to a pediatric plastic surgeon and upon examining Alex, the surgeon told us if Alex did not do a helmet, his face would never be symmetric. Additionally, there were many medical issues that could occur if his face continued to be recessed, affecting chewing, speech, vision, and sinuses.

Here is where I would like to interrupt my story. Alex’s case was extreme. One of his eyes was recessed into his head. This was not a simple flat spot from sleeping too long in one position. I do not think the helmet is the right choice for every child. Two of my friends went to the same plastic surgeon and did not get a recommendation for a helmet. But I do think the best thing to do is consult a professional. After talking to many plagiocephaly and torticollis parents, I do not think most pediatricians are experts in this. Through this experience, I learned it never hurts to have a second medical opinion, particularly from someone who is an expert in the field.

I wrote extensively on my personal blog during this time because it was very emotional. I felt that I failed Alex by not getting him the correct medical treatment early enough. In my story below, I’m going to post a lot of links so those interested can read more about our experience.

Shortly after getting our very emotional diagnosis, we had the helmet casting. I was traumatized when googling other pictures of the casting process, so I posted ours because it was a fun, light-hearted experience. The orthotists were fantastic and made the comment their experience was “the easy twin usually get the helmet.” That was certainly so in our case!

The day before Alex got his helmet, I was an emotional wreck. I still did not have peace with how I failed him. I wrote him this letter about my feelings. That post remains one of my favorite blog entries because it sums up how hard parenting can be some days. The day he got his helmet, I was shocked to find I thought he looked adorable in it. After getting the helmet, it seemed everyone had an opinion on it and I shared my opinion loudly and proudly.

Alex got his helmet at 7 months and we were told he would wear it until he was a year old. We could not believe how quickly his head improved with the helmet.  He got it on right before a couple of major growth spurts and within two weeks, we saw a noticable difference. After 3 months, we got the news the helmet was coming off early two months early and I was ecstatic. As positive as I was about him wearing it, the thing SMELLED and it was a pain to clean it every day. The day Alex got it off, I put it on his twin’s head and took pictures.

Unfortunately, that was not the end of the road for us. Our insurance company declined to cover Alex’s helmet and we got a bill for $3000. They declined it because Alex’s head was 1 millimeter not deformed enough. I decided to appeal because the measurements were taken on a wiggly 7 month old. The fight went on for months. The end of the road was a special appeal hearing I attended where I laid out all the facts – premature twin A, head down, torticollis, in physical therapy for 9 months to deal with developmental issues. Despite fighting a good fight, I got denied and I was angry.

Then I had my faith in the universe restored. We never got a bill from the hospital. When the hospital received the final denial from the appeals committee, they decided to write off the helmet because they should have gotten pre-approval from insurance. A month later, I went to help my sister with her new baby and saw a baby in a helmet. I had my cathartic moment, and it brought me peace to know I did everything I could to help my baby.

Now, 17 months after the helmet came off, I never think about any of this. I barely remember those helmet days and Alex’s head looks perfect. This is my favorite helmet picture, because it is so Alex during this time – he was always so happy and never noticed his helmet.

If you’d like to see more helmet pictures and read more about our experience, the information is on Laura’s Mommy Journal while Alex was helmeted between Jan 2007 and Mar 2007. Firsthand, I know how difficult and emotional this experience can be. For anyone who wants to talk, I can be emailed through this website or my personal website.

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14 thoughts on “Our experience with plagiocephaly, torticollis, and a helmet”

  1. Thanks for sharing all of that Laura. I wasn’t reading your blog back then but went through some of your archives and you did such a good job of describing your experiences. The letter to Alex brought tears to my eyes.

  2. Wow. See – this is why I love blogs. You can feel so connected to someone and totally know that you’re not alone.

    We got lucky with Maggie. Our pedi noticed a flat spot in her head around 2 or 3 months and recommended a doctor who was in the trial stages for a pillow he was using instead of the helmet. Obviously, Maggie’s condition was not as severe as your son’s…and the pillow worked wonders! We’d just have to position her in it every time she slept – night and naps. She *hated* it, but got used to it. And we had to go back every 2 weeks or so since she’d grow out of it that fast. And she was totally out of it within months – with a nice round head!

    I totally hear you about that “did I do everything I could?” part of it all. It’s tough to not beat yourself up over things like this – but I think blogging about it helps :)

  3. I’m SO glad that you posted about this. My son also had torticollis and has seen a physical therapist since 3 months old (he’s now 12 months). By the time he started therapy, his forhead had started to protrude and his ear was shifting forwards. We were told that we had some time before having to make the decision for a helmet. We saw an ortho to have his head measured (for insurance purposes) and then began the search for information on repositioning. My son’s measurements qualified for a helmet, but we weren’t ready to go that route yet. It is a HARD emotional decision. Repositioning is keeping the child off of the “flat spot” through different techniques. In some cases, aggressive repositioning can help to reshape the head, so that a helmet is not required. Since my son’s flat spot was on the corner of his head and not the back, basic repositioning techniques didn’t really fit our case. I went on a crusade to find out everything I could about repositioning. My pediatrician was LITTLE to NO help. I was basically told “just keep him off the back of his head”…….”tummy time, tummy time”. Well, my son also has esophagitis and severe reflux, so we were told to elevate him (in a bouncer) for 30 minutes after eating. Tummy time after eating is out of the question for a puker! The more people I called, the more frustrated and confused I was! So….we did the best we could with the information we had. At about 4 months (when he could sit in a Bumbo or exersaucer, we started to see some improvement). We saw a pediatric neurosurgeon at 6 months who said that everything looked ok and that he wanted to see us back at 12 months for a second look. At 11 months, our pediatrician sent us back to the neurosurgeon after our concern that my son still has an odd shaped head. The neurosurgeon agreed……but said that nothing can be done at this point. Luckily, it is just cosmetic. So, why did they ask to see us again at 12 months if nothing can be done?? So frustrating.

    I feel like we did the best we could, and my son’s head is not obviously mis-shapen. However, I still think back and wonder if we should’ve gotten a helmet. We had an appointment scheduled for the casting and cancelled it, thinking that we’d try repositioning for a few months. I can’t count the amount of phone calls I made to try to get help with the torticollis as it related to the reflux. I really don’t feel like this is brought to the attention of twin parents early enough. I really wish someone would have told me that torticollis is common with twins and that it leads to plagiocephally, so that I would’ve been watching for it from the time they were born. We were told at about 1 month (by the ped.) that we should alternate sleep positions because my son and daughter both seemed to be showing a flatness on one side, but we had to question or doctor MULTIPLE times over the next 2 months for him to finally refer us to PT.

    I guess my point to this LONG post is to ask questions, request second (or even third) opinions, go back often for re-evaluation if you have concerns. Don’t give up. If they tell you to come back in 6 months, go back in 3. 6 months is a long time in an infants life! Looking back, as hard as we pushed, we should have pushed even harder!
    Oh, and as a side note……we were pre-approved for a helmet by our insurance company after seeing the ortho. Months later, we received another letter saying that they decided that we’re not covered. The insurance game is ridiculous!

    When we seen babies with helmets, I always want to go up to the parents and just say that I know what a hard decision it was! Thank you so much for writing this post!

  4. What a challenge to go through without having to second guess the care and insurance policies.

    What a strong twin mamma!

  5. Great story to share. So many new parents are not aware of torticollis, let alone it’s lasting effects. I have 2 year old triplets. Before they left NICU, I specifically asked about having them evaluated for torticollis. The Developmental Specialist told me they were fine, it wasn’t necessary because it was unlikely. Well, within a month I could see that two of my children favored turning their head to one side and were developing huge flat spots. I didn’t even bother with the pediatrician. I had an OT friend take a look and she gave me the name of a pediatric PT who was very experienced with this. The PT starting working with my kids right away. My daughter only went a few times, my son Noah had a few months of therapy. He started out with his ears out of wack, his head totally lopsided to the naked eye and unable to turn to the right. Happy to say his head is now perfect, and his ears are almost lined up. My other son had terrible reflux and the same PT got him set up with a great therapist who fixed that problem too. This PT is my hero! As a side note, the PT told me that my particular hospital was convinced by Blue Cross to decrease evals for torticollis in the NICU. Doesn’t that stink?? Bet they would change their tune if they had to pay for more helmets!

  6. I just got off the phone booking my son for his little helmet he is also a twin and I can tell you the guilt and self doubt is incredible. They will be 7 months old next week and I can only hope that we see the turn around as quickly as you did. It’s just nice to know other folks understand. The torticolis is still an issue for both little ones but atleast I know that there is a light at the end of the tunnel.

  7. It was so nice to stumble across this article. My son who is 6mths old is being fitted for a helmet after Labor Day. It was a hard decision because emotionally you feel like you can fix it. He was diagnosed with torticllos at 2mths and is just about cured. Which was due to PT and (don’t be scared) my wonderful chiropractor. With out him Dylan would still be a mess. The torticolls left Dylan having uneven ears and a bulge on the right side of his forehead due to the way he was sleeping.
    I’m happy to hear that the helmet has worked so well for you. I hope we have the same results!

  8. Hello! I enjoyed reading your story about plagiocephaly and helmeting. In addition to helmets, there are other types of therapy that help the head shape as well, and your son may benefit even at this late date!
    michelle

  9. Thank you for writing this! My son, Ben, had a similar trajectory: after our pediatrician failed to see the plagiocephaly following her casual diagnosis (and no recommendation for PT) of torticollis, she suggested that he might have hydrocephalus or another brain malformation. You can imagine my horror. I immediately found a new pediatrician, who referred us to a PT, and a plastic surgeon for a helmet. He hasn’t gotten his helmet yet– he is 6 months old–and I have gone through all of the feelings you describe. I’ve been so upset, so sad, I’ve written the letter to my little boy you describe, you-name-it. I worry all the time for him, but reading your account and the accounts from other mothers has made such a difference. I am still angry at the time we lost because of our first doctor’s negligence, but I keep telling myself that his torticollis will improve and the helmet will work. Thank you.

  10. Thank you!!! We are gonig through this now with our Anna (who is also a twin head down and breach)!!! Its been quite a ride. I appreciate everything you wrote and feel like there is a llight at the end of the tunnel.

  11. Thank you for sharing your story- it’s great to know there are people out there who are passionate about this condition and its cures. In the UK also the National Health Service knows and does little about flat head syndrome in babies. Awareness and availability of treatments such as the helmet Alex had are on the rise however- hopefully sharing this website on your blog will provide some worried parents with an answer. Thanks again.

    http://www.steeperclinic.com

  12. Hi there. My daughter was born in 1999 with positional plageocephaly/torticollis. She wore a DOC band and got good results. She is 14 now with a learning disability in reading. Specifically in fluency. Despite a decade of me trying to convince teachers that she had a problem in learning. They all passed her along. Knowing that something was wrong I homeschooled her for two years to figure out what the problem was. Visual processing disorder due to slight residual facial asymmetry of the left eye socket. If you have had a child with this, PLEASE run quickly to a developmental optometrist who specializes in vision therapy. If treated early it can be corrected and your child will not suffer like mine did.

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