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Hannah's Info Sheet

  • Print one out!
    This is a great guide to preventing, recognizing, and treating Plagiocephaly. It is a simple one page overview of the most important things about plagio that EVERYONE should know! Please pass it along to your friends, family, pediatrician, etc. Our local Early Intervention office was very happy to have these! You are more than welcome to use this as a guide to making your own--it's very helpful to keep in the diaper bag for the many people who ask about the helmet.

Hannah in the Media

  • Hannah in Cranial Tech's 2004 DOCband Calendar
    Check out my Miss July 2004! You can see the entire new 2005 calendar on Cranial Technologies' website!
  • AZ Fox News Story
    MPG file from a news story aired on an Arizona's Fox 10 News channel about Cranial Technologies' role in the separation of the Egyptian twins who were once joined at the head. Hannah's picture makes a brief appearance towards the end of this video!
  • Newspaper Article
    This front page article on Hannah's Story ran in our local newspaper.

Plagiocephaly Prevention

  • ~Limit use of swings, bouncy seats, car seats, etc. Try a carrier that allows you to "wear" baby instead.
  • ~Use a memory foam sleep positioner to alternate which way baby's head is turned while still backsleeping.
  • ~Rotate placement of toys in the crib, carseat, stroller, and during floor play time.
  • ~When bottle feeding, be sure to alternate which side you hold your baby on during feedings
  • ~Provide lots of supervised tummy time from birth.
  • ~Alternate the end you place your baby's head at in the crib and on the changing table

Torticollis

  • Many babies who develop plagio have neck tightness, or Torticollis, which makes repositioning very difficult. These babies may need physical therapy or neck stretching exercises.

Favorite Plagiocephaly Links

  • Plagiocephaly.org
    A great website with info on everything plagio related--from prevention to treatment and everything in between.
  • Cranial Technologies
    Makers of Hannah's DOCbands. Their website has a fabulous Tummy Time Brochure and tons of research and information, including a parents area with discussion board.
  • CAPPSkids
    Cranioysynostosis And Positional Plagiocephaly Support
  • Yahoo! Groups : Plagiocephaly
    An online community of about 3,500 members! This is a parent run site designed to help parents identify and avoid plagio, as well as support in repositioning, banding, and fighting isurance for coverage! This is the best place to get any plagio related question answered!

About Treatment

  • Early diagnosis is the key to treating plagiocephaly. For mild to moderate cases, a trial of aggressive repositioning is recommended first. If after a few weeks the desired results are not accomplished, helmet therapy is often recommended. The best correction is achieved in babies younger than 6 months when the skull is still very soft and growing rapidly, and most helmet providers only treat until age 18 months. Helmets are custom made to a rounded version of your baby’s head and are generally worn 23 hours a day for 3-4 months. It does not hurt the child or pose any risk to proper brain growth and development.

Hannah's Plagio Pals

Plagiocephaly Merchandise

  • Precious Bambino
    Plagiocephaly Gifts, T-Shirts, Mugs & Plagio Wear! Sayings like "Banded Beauty, Helmet Laws Stink, Under Construction," and Graduation T-Shirts!

Plagio & Cranio Webring

« April-July 2004- DOCband #3 & An "Older" Baby | Main | August 2005- One Year After Graduation »

Looking Back

Believe it or not, those 40 weeks are a very distant memory.  It has only been a couple months since graduation, but it really feels like it was a very small part of our lives.  I certainly don't miss all those long drives (if you have to travel, buy a portable DVD player--the thing is worth it's weight in gold!) or scrubbing the helmet every day, but other than that they are all good memories.  The people at Cranial Tech were wonderful, and it was kind of sad leaving there for the last time after spending so much time there and knowing all they did for Hannah. 

After 3 bands and all those months of treatment I learned quite a bit! If you're on the fence about banding, go for it! It can only make things better and it really doesn't bother the baby. It just doesn't make sense to risk regretting your decision for your whole life, so I really feel like if you're even asking yourself the question of if you should band or not and the band is offered to you by an experienced orthotist, than you have nothing to lose. I'm glad we did all three of Hannah's bands and if I could go back and do it all over again I'd make the same decisions. Hannahflowers

If you do go the helmet route, there are things you can do to make it easier. Put your baby's name on the helmet because it acts as a great ice breaker for people to ask about (rather than just stare at) the helmet. Some days you won't feel like it or won't have time to talk to everyone you see though, so make an info sheet like Hannah's and keep it in your diaper bag. These things were lifesavers because you really wouldn't believe the number of people who will want to ask you a million questions! It's the only opportunity you'll probably have to educate others about plagio, so take advantage of it--once the helmet is off, nobody will know to ask!

Also, do the exit cast! Regression is very rare, but worrying about it is not. Being able to look at that exit cast can give you great piece of mind if you go through that regression panic stage.  Hannah had 4 castings and is no worse off.  She didn't enjoy them, nor did we, but I'm sure she doesn't remember them.  Actually, as she got older, the picture sessions at Cranial Tech became worse than the castings!  If you look at her Band #3 Progress Photos you'll see what I mean!

Beginning the process is very overwhelming and scary.  It does get easier though.  It is especially intimidating if you're having to fight your doctor to gain support.  Being a young mom, I was worried what people would think of Hannah wearing a helmet, and while I did get some of *those* comments, it was mostly all positive.  When I did encounter a rude person, I always reminded myself that this would be the same type of person who would have made fun of Hannah in the future for her crooked head if I hadn't banded her.  I'd much rather have them staring at her as a baby (when she smiles and chalks it up as cuteness points) then have her be in school and having her classmates pick on her.  I often explained her helmet as being similar to braces for teeth and most people can relate to that.

If you have any questions/comments/etc. please either leave a comment or email me.  Let me know if there is anything else about our journey that you'd like me to include. 

Comments

Wow! What wonderful ideas! A really awesome website. Well done. When Hannah is old enough I am sure she will be very greatful for all you did for her.

I am so impressed with your website! Thank you for all your information and being so willing to share. We are at the beginning of this. Victoria is 11 weeks and we have just started the aggressive repositioning and neck streching. It is so wonderful to read of others who have gone ahead of us in this adventure! Thank you!

Sarah, what a wonderful website. You will educate and inspire so many people! Hannah has an awesome mom!

i think this site is absolutely fab and many thanx for sending me the link, it has refreshed my hope

Alice

Sarah: Very nicely done. Isn't typepad great? You've created a wonderful resource here.

WOW! What a great mommy you are! Hannah is a lucky girl! Thanks for educating us in such a wonderful way. The web site is TOP notch!

I just wanted to thank you for making this page. My son just received his doc band today, after a long struggle with both my husband and my pediatrician. Reading Hannah's story has made me feel much better about my decision. Thanks again!

What an awesome website! There are two babies in our playgroup who have craniosynotosis (sp?). Both have had surgery and one has a helmet while the other does not. I am going to share your website with everyone, it is such a wonderful resource. And I'm glad Hannah is doing so well, I can't believe she can be so big already!

Thanks for visiting my blog and linking me to yours! Have a great day!

Tara

We are about to start on our journey to correct our son's plagio and your site is very inspirational. You should be very proud of yourself and Hannah's beautiful little head x

I love Hannah's website. She is such a cutie pie and has a wonderful mom too!

What a great site! Thanks for all the invaluable info. My daughter (a twin) has severe plagio which also started inutero. She also has severe tort and we are having her cast made on Monday. I am very nervous but know we have made the right decision.

I have a two year old little boy who has plagiocephaly and they say
they can,t do anything for him.what should i do about this.Im so afraid if i don,t do anything about it he will be made fun of when he gets older.People already stairs at him now.
please give some info.about what i should. Do you think they could do the band treatment on him or is to old for that.This is driving me crazy.I need of what to do.

Tracey Mekins

this site has been wonderful to read. my baby girl's head looks just like hannah's did. she is almost 5 months old and we are just starting to look at our options. this site has been loads of help. thank you so much. its nice to hear a moms point of veiw, knowing what the future could be if not corrected is awful for a little girl. The idea of decroating the band is such a good idea. how creative!

I am so greatful for your website. When my daughter was diagnosed with plagio I was clueless. I typed plagio into yahoo search and your website poped up. Every question I had was answered here. Thank you so much for sharing your story. My daughter is getting measured for her helmet at the end of the month and I am scared, worried, nervous about the whole process. Your site has put my mind at ease. Thank You Thank You Thank You!

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