Monday, October 31, 2016

Ask The Doctor: Tonsillectomy For Sleep Apnea?

By Earl Gage, MD 
Kids Plastic Surgery, Mercy Children’s Hospital – St Louis, MO

CCA posts a monthly blog series called, "Ask the Doctor." You can submit your questions to Annie Reeves ([email protected]) and we will ask Dr. Earl Gage of Kids' Plastic Surgery in St. Louis to answer them. Thanks Dr. 
Gage for helping spread information and resources for our cranio families!

Question: I have seen a few children with sleep apnea that improved after tonsil and adenoid removal. I know of one child that the surgery made their sleep apnea worse. Do you recommend this procedure? Do you do a sleep study first? It seems to be a “trend” with doctors right now.

Answer:  When a child has a craniofacial condition, particularly one that results in undergrowth of the midface, sleep apnea is common. If obstructive sleep apnea is severe, this can result in significant sleep disturbances and low oxygen levels, which can have a negative impact on development. In some instances, severe apnea can even be life threatening. 

If a child has mild to moderate sleep apnea and large tonsils, I believe it makes sense to consider tonsillectomy. Many times, this results in substantial improvement in nighttime breathing and quality of sleep. In more severe cases of obstructive sleep apnea, additional treatment beyond tonsillectomy may be required, depending on the age of the child. These might include midface distraction, LeFort advacement or tracheostomy. The goal with any intervention is to improve breathing, improve sleep quality and help your child develop normally.

Regarding need for a sleep study, I would say it largely depends on the reason for the tonsillectomy. There are multiple reasons that an ENT surgeon may recommend tonsillectomy, including frequent infections, tonsillar abscesses, diseases of the tonsillar tissue or obstructive apnea, to name some of the most common. Where tonsillectomy is done for infection or disease related reasons, a sleep study is probably not necessary. However, when tonsillectomy is being considered to address sleep apnea, as is more commonly the case in children with craniofacial disorders, then it probably is a good idea to obtain a sleep study. The sleep study can help you clarify how bad the sleep apnea is and whether it is obstructive (due to a mechanical blockage) or central (where the brain “forgets” to breathe). If severe obstructive sleep apnea is seen in a child with both big tonsils and midface undergrowth, then the study may help predict whether tonsillectomy alone is likely to help. For instance, if apnea is severe, the tonsils large and the midface severely retruded, it may be that tonsillectomy will help some but not enough. Recognizing this before tonsillectomy can lead to a larger team discussion about what other interventions may be required and how these should be sequenced and timed. Finally, when compared to a post-operative sleep study, the pre-operative sleep study serves as a useful baseline to determine if surgery was successful and helps your team decide if something else needs to be done.

I hope this helps. As always, please don’t hesitate to raise your concerns and your questions with your team.  

Tuesday, October 25, 2016

Dawn Shaw Shows Us How To "Friend the Mirror" in Her Series of Webinars

By Kara Jackman

Dawn Shaw, motivational speaker, author, and writer gives children and adults with facial differences a way to love and accept themselves through a series of webinars. Shaw was born with a fast-growing tumor called, a a teratoma. The tumor affected her ability to breathe at birth. A  tracheostomy was performed so Shaw could breathe and the tumor removed. This left her with some paralysis, a jaw that needed realignment, hearing loss, and paralysis. She owns and operates an Icelandic horse farm where she lives with her husband, Ian, in Washington. 

She writes blog articles and has written three books, Facing Up To It, which chronicles her personal story, and Facial Shift: Adjusting to An Altered Appearance, and Friending the Mirror: Changing How You See Your Reflection. 

Her book, Friending the Mirror, gave way to a series of webinars. All of them were recorded and saved to her website. The first episode that appears below, introduces viewers to the series and Shaw's goals for them, which are "to help people find beauty through happiness by directly addressing and providing practical solutions for issues and insecurities related to appearance, disabilities and other physical challenges."

There are over 50 webinars available. Her skills as a video and communications professional shine through in these well-scripted recordings where Dawn, and others, share on a variety of different topics around acceptance, diversity, and adversity that come with looking different.  

Another of Shaw's webinars we think you should view is Episode 26 called "Beauty = More than a 'Like.'" This episode features Crystal Hodges, a woman born with a portwine birthmark. Unfortunately, an image of her went viral as an Internet meme. Hodges took this negative experience and turned it into a positive by working "to redefine society’s understanding of true beauty via blogging and public speaking, emphasizing that photos are made up of far more than pixels and that we don’t need strangers on the internet to validate who we are," says Shaw. Hodges discusses the value of mentorship and how to find and capture beauty. You can watch it out below. 

We will be featuring more of Shaw's words and videos in future CCA blog posts. Shaw is such an inspirational and elegant speaker. We know you will learn so much from her perspective of the herself and the world.

Friday, October 21, 2016

Make An Impact...Help Researchers Test A Survey for Diagnosing Rare Diseases

Take the Survey Today!
By Kara Jackman

Have a rare disease or want to help family and friends that do? Take part in the testing of a survey tool created by Engage Health and LapidusData for Global Genes. With your expertise in the area of rare diseases, an improved form of the survey will be distributed widely to help identify whether a person has a rare disease. And based upon their answers to the questions that are part of the tool, they will be directed toward an appropriate set of resources to help in their treatment.

How Does It Work?

The researchers from Engage Health and LapidusData say, “The tool uses a set of questions that ask about common experiences of rare disease patients. If their answers indicate that they have a rare disease, the tool would then provide them with helpful resources that they may not have been aware of.” People unaffected by rare diseases can take the survey as well.

Where Can I Find the Survey?

The survey is located at this link.. If you have any questions regarding the survey, please send an email to Maureen McArthur.
What Is A Rare Disease?
A rare disease is one that only affects 200,000 or fewer people. In the U.S. ten percent of the population has a rare disease. Patients have a difficult time communicating, receiving quality medical treatment, and getting a diagnosis from medical professionals.

Who is Global Genes?

Global Genes is a California-based, national nonprofit that strives to change the current state of those suffering from a rare disease through advocacy. Through this survey, you can aid them in their fight to destroy these barriers to treatment. Global Genes mission statement asserts, “to eliminate the Challenges of Rare Disease by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease.“ Learn more about their work at .

Wednesday, October 19, 2016

Artist Interview: Scott Clarke

Today we're featuring an interview with Scott Clarke, artist and longtime CCA supporter who has created a set of books, one of "Cher-toons" and one "Cher-toons" coloring book that benefit CCA every time you order! We are so grateful that Scott is using his talent to benefit our kids. Read on for his deeply personal journey and be inspired by his kindness in action. Make sure you order your copy via to boost the donation even more! 

CCA: Where are you from?
SC: I'm from the DC area, I was abandoned when I was 9 months old, left in a field and covered with leaves, found the following morning by some kids playing outside (yes, it's true and a very long story). I was blessed to have been adopted shortly after I was found and from there I was raised in the Annapolis, Maryland suburbs .... a beach community where we grew up barefoot little beach bums.

CCA: When did you first start drawing and illustrating?
SC: I started drawing at a very young age, I think around 4 or 5 is when it became "serious." I remember copying techniques from a girl who drew well in my 2nd grade class, I would also sit for hours and draw the Flintstones ... I loved the Hanna-Barbera style and it stuck with me even to this day.

CCA: What drew you to celebrities and caricatures? 
SC: When I was about 10 or so I began to draw CHER - I had found a book about Bob Mackie and I would draw the stars in the book and the amazing clothes they were in. I especially loved drawing Cher because every photo was so different, the hair, clothes etc., always something so cool. I would watch her on TV and draw the scenes etc. I would also draw entire movies out in little books. I remember drawing the Poseidon Adventure once and Gilligan's Island was another I loved to draw from!

CCA: When did your art turn into more than just a hobby?
SC: About 10 years ago my art turned in to a bit more than just a hobby: I decided to create a greeting card line. I did various kinds, humorous, heartfelt, etc., but then a relative of mine was diagnosed with breast cancer and I felt the desire to do something but wasn't sure what to do. A friend involved in FIND THE CURE campaign asked me to design a breast cancer awareness greeting card...I did and an entire line of them came along! I sold them online for a while and part of the proceeds went to various breast cancer organizations, hospitals, etc. I still have them available on Cafepress I believe. And I share the art on Facebook for inspiration to survivors.

CCA: What’s your process like? How long does it take to go from idea to finished illustration?
SC: My process is usually about 30 minutes to write the poem and 30 minutes to draw the art. When I first began drawing my caricatures I decided I didn’t want them to be like everyone else’s. I wanted something unique so I began the poems with the art. I usually go with something current in their life, or something they’ve done or a mini bio. I always research the celebrities I draw before I do them: reading, Youtube, old photos etc. It helps with the feeling. As for other art like the CCA things I do, I find a mission statement and work around it with a beginning, middle and end, then add a drawing that fits.

CCA: Who are some of your favorite illustrators and artists?
SC: MY FAVORITE ARTISTS? Hmmmmmm….I love sooooooo many, I always think everyone else’s work is better than mine and get discouraged! LOL, I don’t think I have a favorite artist … but many styles are inspiring to me!

CCA: What’s your favorite illustration you’re done?  
SC: It wasn’t my favorite because I liked the art so much but the one that made it to Cher’s Birthday Cake will always be my shining moment.

CCA: What inspires you?
SC: What inspires me is people who have nothing and still find the courage to get up every day and smile, Children with mental or physical challenges that move through life without despair and overcome. Elderly people with wisdom, wit and heart to share even after they’ve been brushed aside. I get inspired by those I want to help, even if they don’t need it.

CCA: What other hobbies do you have?
SC: My other hobbies are boring, I enjoy my gym time, I like yard work, I love music and love to sing (wish I could do it more often). I sang with a band years ago. My art keeps me very busy…not much time for other hobbies! LOL.

CCA:What does kindness mean to you?
SC: Kindness to me is making someone simply smile and expecting nothing in return.

CCA: What’s your motto?
SC: My motto, I have a few, but my favorite is “things can’t fall in to place if they don’t fall apart first”

CCA: Why did you agree to help CCA?
SC: I had never heard off CCA until I saw the connection Cher had with the organization. Once I learned of it I began to look at it more in depth. Having a young daughter myself my heart was hooked on the organization. My daughter had a cyst in her face as a child, nothing too severe, but I remember the difficult time she had and what she went thru before it was removed. Once again it wasn’t anything so severe that it was life altering but it brought me even closer to CCA and help me see just a small bit of what the parents and children must go through. I wanted to help, and the best way for me to help is to use my gifts (my art) to help with awareness and acceptance. Since I’ve begun sharing my talents with CCA I’ve grown to love these kids I’ve never met! 

CCA: Name 5 things you'd like to do before you die? 
SC: Hmmmm….I’d love to see a Broadway Show (no I’ve never seen one), I’d love to sing again, I’d love to get in to inspirational speaking (I survived when I don’t think I was supposed to, and I’d love to help others see they can too), I want an art degree (but I don’t feel like doing the required courses part), I use to say I WANT TO MEET CHER BEFORE I DIE, but NOW I think to myself she should wanna meet me! HAHA!

Thanks, Scott, for donating a portion of your sales from these awesome Cher-Toons books to CCA. Get your copy here.