Thursday, December 25, 2014

Monday, November 17, 2014

Seattle Children's "A Family Approach" to Surgery

Seattle Children's Hospital publishes blog called On The Pulse, with interesting patient stories on what it is like to undergo treatment and surgeries, which can be a scary process when you don't know what to expect. We enjoy featuring stories of children and families who have found and received successful treatment and want to share their journeys with other families at different stages of the process. Below, you'll learn about Genesis and Grayson, and two journeys through surgery, in"A Family Approach, The Unique Stories of Two Craniofacial Patients."

If you are a family with questions, please contact us at the office (800.535.3643) and check our Programs and Services page on our website. We also have a list of Qualified Centers

Discovering your child has a craniofacial condition can be a stressful time filled with questions and uncertainties. Seattle Children’sCraniofacial Center aims to not only keep the patient’s needs in mind, but also the needs of the entire family. Below are the stories of two unique craniofacial journeys and how the patients and their families received support throughout the process.

Baby Genesis before her surgeries
Genesis and family find comfort after early diagnosis
Genesis Murillo is a fun-loving, 4-year-old who was born with bilateral cleft lip and palate – a birth defect that occurs when parts of the lip and roof of the mouth don’t fuse together during pregnancy. Cleft lip and palate affects one in 700 infants worldwide, and is one of the most common birth defects. It can be caused by several factors, including genetic abnormalities, but there is no single cause.

Genesis’ mother, Nolby Manzanares, discovered her daughter’s unique abnormality during one of her first ultrasounds, and the entire family was immediately overcome with worry and uncertainty. After meeting with the doctors and care team at the Seattle Children’s Hospital Craniofacial Center, Genesis’ family was comforted knowing that her craniofacial condition could be treated.

Discovering Genesis’ bilateral cleft lip and palate before birth
It is understandable for any parent to feel concerned after discovering an abnormality in their child while pregnant. While Manzanares was fearful at first, she felt a sigh of relief after the Seattle Children’s doctors educated her on Genesis’ condition and informed her that they would be able to repair it. The reassurance and resources Manzanares received from the Seattle Children’s staff helped put all of her initial worries at ease.

“It was hard. Nobody in my family has ever had cleft lip and palate,” said Manzanares. “When I met the doctors, they told me they’d be able to fix it. I felt so much better after meeting with them.”

Dr. Kelly Evans and Genesis at
Seattle Children’s Hospital
Finding comfort through the craniofacial care team
Genesis was a very strong girl throughout the treatment process, and endured three surgeries before she was 18 months old. The family made frequent visits to Seattle Children’s and met often with Genesis’ doctor, Dr. Kelly Evans, and her surgeon, Dr. Raymond Tse.

“I met Genesis’ parents during a prenatal clinic visit at the Craniofacial Center, where they also met a craniofacial social worker and craniofacial nurse,” recalled Evans. “As a team, we were able to talk with her parents about having a baby with cleft lip and palate. At our first clinic visit with Genesis, we were able to cater our discussion to Genesis’ specific needs to develop a holistic treatment plan. It was clear from the very beginning that Genesis had joined a loving and supportive family.”

“We met with Dr. Kelly on the first day and it was so comforting,” Manzanares recalled. “She really connected with Genesis and treated her and our entire family with care. It made me feel a lot better.”

Genesis enjoyed every minute with her doctors. She even helped the doctors by handing them medical tools they needed for her procedure – all while reminding them to give her stickers at the end.

“Genesis did great during her surgeries,” said Tse. “With careful treatment, kids do great. They do what they want to do and be who they want to be. The fact that a child has a cleft lip doesn’t have to hold them back.”

Awaiting her final surgeries
Genesis is awaiting her fourth surgery at Seattle Children’s to fix her breathing issues. Through her high spirits and trust in her doctors, she will continue to use her positive energy to make it through this upcoming procedure.

Turning to the right resources, like visiting online medical associations’ websites and consulting doctors directly for their medical opinion, led to a proper and thorough diagnosis for Genesis. It also gave Genesis’ family confidence that her condition was not as abnormal as they initially thought, and that it could successfully be repaired.

Genesis and her family continue to visit the hospital each year for the annual craniofacial picnic, and plan to remain deeply-rooted in this unique community that played a special role in their lives.

Grayson as an infant before treatment
Jet-setter Grayson’s craniosynostosis journey
In the past year, Grayson McLaughlin of Spokane has seen more of the world than the average 2-year-old. From flying to Seattle to dipping his toes in the Maui sand, Grayson and his family have spent many days traveling together to take a break from their daily lives.

Grayson took his first trip very early in his life. At just eight weeks old, Grayson was diagnosed with metopic craniosynostosis – a rare craniofacial condition that occurs when one or more of the special joints (or sutures) in a baby’s skull fuse together earlier than normal, causing a malformed head shape that prevents the skull and brain from fully developing. Each year Seattle Children’s evaluates around 80 new children with craniosynostosis and performs about 90 surgeries to correct this condition.

Grayson’s head shape before (left) and after (right) surgery
Traveling for treatment
Grayson and his family regularly traveled 300 miles to Seattle Children’s Hospital – a journey that his mom, Katherine McLaughlin, made sure to document in Grayson’s blog.

“We’re so fortunate to live just a short flight away from Seattle Children’s Hospital to receive top notch care at their amazing craniofacial clinic,” said McLaughlin.

During his treatment at Seattle Children’s, Grayson and his family often met with their integrated craniofacial care team – a team that supports the patient through the entire care process from beginning to end, ensuring that the child and family are comfortable and receive comprehensive care. Depending on the circumstances, a care team can be comprised of and anesthesiologist, neurologist, social workers, nurses, craniofacial plastic surgeon and a neurosurgeon.

“The team at Seattle Children’s was awesome,” said McLaughlin. “They laughed about how much energy Grayson has. When he started to melt down after eight hours with no nap, they turned the lights down and let us put him to sleep before continuing with the appointments in whispers.”

Grayson relaxing during his first trip to Maui
Grayson’s carefully planned out surgery
The entire surgical procedure was disclosed to Grayson’s parents, who appreciated knowing what their son would endure. According toMcLaughlin, Grayson’s condition required a craniofacial plastic surgeon and a neurosurgeon to remove the front of his skull and reshape it with screws and plates.

“I’m always taken aback by how kind, gentle, and personable both his plastic surgeon and neurosurgeon are, and how patient they are at explaining things to us and answering all our questions,” she said.

When Grayson’s bones were more mature, his surgeon, Dr.Craig Birgfeld, broadened his skull and widened his orbital bones. After six hours in the operating room, Grayson’s scull had been remolded and reshaped to allow his bones and brain to develop properly. “One of the hardest things was the realization that after the surgery, my baby’s appearance will be changed dramatically,” said McLaughlin.

“Grayson demonstrated improvement immediately after surgery, and required only a few days of recovery,” said Birgfeld. “I was very pleased with his outcome. I expect his skull to continue to grow and develop normally without his peers ever knowing he even had surgery.”

Nearing the end of Grayson’s medical journey
Grayson and family returned to Seattle Children’s earlier this year for his one-year post-op check-up. Swelling around his face had diminished and the scars on his head were nearly invisible, but his doctors said there is still more healing to be done.

Grayson will be back in one year for a CT scan, and as his cranio journey comes to an end, he and his family look forward to more vacations, like their recent trip to Maui.

“Having a child with craniosynostosis can be an extremely scary time for a family,” said Birgfeld. “This is why our team exists. We aim to guide families like Grayson’s through this stressful time and provide them with what we believe is the best, safest treatment with the least intrusion upon the child and the family’s lives. We will always be here for our patient families.”

If you are a qualified medical center and would like to share your resources with the CCA community, please contact us. 

Monday, November 3, 2014

Seattle Children's Publishes Craniosynostosis Video Series

Seattle Children's Hospital recently published a video series on Craniosynostosis and has shared this resource with us. Below you will find six videos, which are excellent for spreading awareness and information, plus the series gives parents and family members reassurance and advice when anticipating surgery for craniosynostosis.

In the series, you will find the following videos:

Here's Julian's story, which is Part 3 in the series. 

CCA thanks Seattle Children's Craniofacial Team for sharing these videos with us. 

If you are a qualified medical center and would like to share your resources with the CCA community, please contact us. 

Wednesday, September 3, 2014

CranioNews: Chickens Helping Cranio Research?

These chicks are part of UC Davis' living library of poultry and avian genetics, which includes the talpid lines examined in this study. (Mary Delany/UC Davis photo)

A University of California-Davis science professor, Mary Delany, has made an interesting breakthrough in her research. The discovery may lead to a deeper understanding of the genes that cause craniofacial anomalies. From the article, "The researchers focused on a mutation of the gene named talpid2, known to be associated with a number of congenital abnormalities, including limb malformations and cleft lip or palate."

Read the rest of this fascinating article here.

Monday, September 1, 2014

Happy CAM & Labor Day!

We hope you have a great Labor Day today. It's also the official start of Craniofacial Acceptance Month!

Don't forget to download avatars from the CCAKids site for Facebook and Twitter and change your profile pictures to the CCA logo and poster! 

Share with us in the comments how you're celebrating this month.

Saturday, August 30, 2014

Let's Turn FB & Twitter Yellow!

Are you ready for Craniofacial Acceptance month?! It's our favorite time of the year!

STARTING SEPTEMBER 1, we want our followers to turn Facebook and Twitter yellow!
You can download avatars from the CCAKids site for Facebook and Twitter and change your profile pictures to the CCA logo and poster.

There's also a list of CAM picnics going on around the country!

We're looking forward to a great month celebrating acceptance and spreading awareness with you!

Stay tuned for posts all month long featuring special events, information, and personal stories from CCA families.

Thursday, May 22, 2014

Charitybuzz: 6 Days Left to Bid!

Have you heard of Charitybuzz?

Charitybuzz is the place to find extraordinary experiences and luxuries to benefit remarkable charities making an impact.

Our online auctions bring together hundreds of the world's most acclaimed celebrities, inspiring luminaries and beloved brands to give you unforgettable access to your passions. Plus, you can feel good knowing that every winning bid supports an incredible cause.

Check out all the awesome items up for auction for CCA! 
They are expiring in less than ONE WEEK!

Here's a FEW of the awesome items for auction:




good luck and happy bidding!

Sunday, May 18, 2014

Grateful Sunday: George Saunders Commencement Speech on Kindness

Today's Grateful Sunday is a commencement speech by George Saunders at Syracuse University. We think you'll enjoy it very much, especially since the topic is on kindness. CCA also sends a big congratulations to everyone graduating in the Class of 2014!

Here is an article written about the speech and the full transcript here.

Wednesday, May 14, 2014

Wonderful Wednesday: The Julian Chapter

Did you know that Wonder author, RJ Palacio, has written a new story called The Julian Chapter?

Yes! Debuting just this week, you can now peek into Julian's side of the story.

From the description of the book:
Over 1 million people have read Wonder and have fallen in love with Auggie Pullman, an ordinary boy with an extraordinary face. Now readers will have a chance to hear from the book's most controversial character—Julian. From the very first day Auggie and Julian met in the pages of the #1 New York Times bestseller Wonder, it was clear they were never going to be friends, with Julian treating Auggie like he had the plague. And while Wonder told Auggie's story through six different viewpoints, Julian's perspective was never shared. Readers could only guess what he was thinking.Until now. The Julian Chapter will finally reveal the bully's side of the story. Why is Julian so unkind to Auggie? And does he have a chance for redemption?
There's also a great interview with RJ on Slate. Check it out and have a Wonder-ful Wednesday!

Friday, May 2, 2014

Friday Remix: Ask Amy

Amy Poehler does this great web series called "Ask Amy." We've ran one before on the blog and I thought this particular video was also full of great advice, too. Check it out!

Monday, April 28, 2014

Media Monday: Christian Gets a new Smile

Today's Media Monday post is from On the Pulse, Seattle Children's Hospital's blog. We love this story of Christian's successful smile surgery! Happy Birthday, Christian!  CCA thanks Chryst'l at Seattle Children's for sharing this post with us!

Christian smiling at soccer practice right before his birthday.
Christian at soccer practice before his birthday.
Christian Roberts was as excited for his 12th birthday as any child would be. But this April marked a very special occasion. It was the first time he could express that excitement with a smile.
Twelve years ago, Christian was born deaf and with bilateral facial paralysis due to a rare genetic anomaly called CHARGE Syndrome. For his entire life, the happy, playful Dallas boy who loved video games and LEGO bricks couldn’t move his facial muscles to smile. Christian wanted nothing more than to better communicate with his family, and with others who don’t know sign language.

Christian gets a new smile
Last year, Christian came to the Seattle Children’s Hospital Craniofacial Center to get a new smile. In June 2013 Christian’s surgeon, Craig Birgfeld, MD, removed a small muscle in Christian’s chest. He connected one end of this muscle to Christian’s cheekbone, and the other end to the corner of his mouth, to form one half of a smile.
Christian with Dr. Birgfeld at Seattle Children’s before his second surgery.
Christian with Dr. Birgfeld at Seattle Children’s before his second surgery.
“It’s not a simple procedure,” Birgfeld says. “We spend a lot of time figuring out exactly where to place the muscle so that when it pulls, it makes a smile.”
Shortly after his first surgery, Christian’s facial muscles moved for the first time.
“I heard Christian running into my room laughing louder than I had ever heard,” his mother Molly recalls on Dallas Moms Blog. “He was signing, ‘Look, mom, my smile woke up!’ I proceeded to scream with joy and held my little guy tight, with tears running down my face. That tiny bit of movement was so long awaited and touched the depths of my heart beyond explanation. We were on cloud nine for weeks.”

Christian showing off his smile at his birthday party.
Christian showing off his smile at his birthday party.
The family returned to Seattle in December for the second surgery, when Birgfeld performed the procedure on the other side of Christian’s face. Then the family waited in suspense for the answer to the big question: would Christian get a smile for his birthday?
After months of progress, Christian is now able to produce a fully formed smile — just in time for his 12th birthday.

Wednesday, April 23, 2014

What to Expect: Eye Exam

Today we have a guest post from Meg Storie about her recent trip to the eye doctor!

Meg was born and raised in Columbus, OH. She lives with her husband, David, and their codependent cat. Meg enjoys reading the paper, traveling and doing mundane tasks. She has been part of the CCA family since her first retreat in Indianapolis. Meg was born with Treacher Collins Syndrome (Meg says, "Think of clipped ears on Peeps!") and serves as a provider for children on the autism spectrum and caregiver to the elderly. Meg says, "My happiness is handful of Reese cups, a walk, lots of water and a sense of humor daily!"

image source
It has been over twenty years since my last eye exam. I had small harmless eye checks at the DMV and in the nurse’s office in grade school, but never a thorough one from a medical doctor. I scheduled mine when I scheduled my husband’s annual eye exam. My advice is to schedule your appointment to get your eyes dilated on a cloudy day! Unfortunately, the day I went, it was really sunny.

The technician welcomed and introduced me to five machines. She was patient and walked me through each step as I was tested with each machine. The machines take pictures of the front and back of the eye, shine a light in your eye to check for any blurriness, asses your vision, and also check your ability to focus on an object. I was wondering why I was staring at a little picture of a farm... Too bad it didn't have a pig to go with it! Then, came the glaucoma test... I didn't care for the air puff and the poking, but it is mostly painless. 

Then, I met with the ophthalmologist and had opportunity to share my concerns. I have sensitivity to the sun and my left eye constantly waters. I also told her that I get migraines. She said I have no eyesight issues and that I didn't need glasses. My problems didn't seem to concern her, but she told me she going to read up on Treacher Collins Syndrome before my next visit.  She also suggested an eye drop or eyelid surgery to reduce the watery eye, going forward.

After the exam, David shopped for his new pair of glasses while I went next door to Panera Bread to get a smoothie. By the time we left, my eyes and head were somewhat back to normal to drive home, but I would also recommend walking home if you can. I doubled up my shades and walked out knowing my preventive eye health was taken care of, but we might need to borrow couple Pilot dogs for next time we get our eyes dilated!

Friday, April 18, 2014

Thursday, April 17, 2014

Book Review: Stephen

Today we have a book recommendation from blogger Stephen! Check it out and put it on your summer reading list! 
A book I would highly recommend is Creativity: The Psychology of Discovery and Invention, by Mihaly Csikszentmihalyi.

What especially attracted my attention is the section on what the concept of "difference" is.

The author explains that if you substitute the word "not" for difference, then it helps define what difference is and how it applies to our lives.

Here's an example:  
Four (4) people share the same LIKE for Pizza and one does NOT.  The one who does NOT would be called "different" by the other 4.  The 4 might inquire as to why this person does NOT like Pizza.  BUT, by the answers given and the conversation between individuals, even the people who like Pizza might find out more about themselves which would deepen their own experience in enjoying Pizza (and understanding those who don't).

So if you list the NOTs, then it describes the difference:
Not the same age.
Not from the same school.
Not working.
Not exercising.
Not riding the bus.

By overtly clarifying what is different, the focus can shift on to what is the same about the people in the group. 

For more informative thought exercises, check out the book: Creativity: The Psychology of Discovery and Invention by Mihaly Csikszentmihalyi 

Monday, April 14, 2014

Media Monday: Adam Pearson

Today's Media Monday article features Adam Pearson, an actor with NF, in the new movie starting Scarlett Johansson, Under The Skin. Check out the full article here.

 Photograph: Richard Saker for the Observer
Two excerpts:

"One of the main reasons for taking the role was because it was so moving and honest," says Pearson over a lunch of fish and chips in a south London cafe. "For me, the film is about what the world looks like without knowledge and without prejudice. It's about seeing the world through alien eyes, I guess."

More importantly, Under the Skin gave Pearson an opportunity to challenge what he sees as the stigma surrounding representations of disfigurement on screen. "There's a lot of fear around the unknown. If I can try to be as normal as possible and show there's nothing to fear – either on film or day to day, going round the corner to go shopping for milk – then the more people see it in wider society, the less stigma there is. If I just sit at home and mope, hugging the dog and crying, nothing's going to change."

He points out that facial imperfections are often used as shorthand for evil in films, whether it be Blofeld's eye scar in James Bond or the villain in Disney's recent adaptation of The Lone Ranger, whose face was severely scarred and who was given what appeared to be a cleft palate in makeup. "It's always used very lazily," explains Pearson. "In an ideal world, actors with conditions would play the characters with these same conditions, but that's a way off. Instead, film-makers tend to get a generic, 'normal' actor and use prosthetics. If they'd got Adam Sandler and blacked him up to play Nelson Mandela, there would have been an uproar ... but with scars and stuff, it seems like people are cool with that."

Source: "How Scarlett Johansson helped me challenge disfigurement stigma" by Elizabeth Day

Tuesday, April 8, 2014

April is Poetry Month

April is National Poetry Month! 

What's your favorite poem? 
Celebrate poetry month by leaving your favorite poem in the comments!

I love this one by Shel Siverstein, because it reminds me to be myself at all times... 
that's how we will meet the kind of people we want and need in our lives.

Monday, March 31, 2014

Media Monday: Camryn Berry

I love this Media Monday post from the Franklin Sun Journal. Not only is Camryn Berry an amazing individual and inspiration, but her method for presenting to a classroom will inspire and empower you to do the same! If you do decide to make a Wonder presentation, let us know and get more information here. 

You'll love this terrific article from Barry Matulaitis. Below I've included some of my favorite parts and bolded great ideas for classroom presentations.

LIVERMORE  –  If the choice is being kind or being right, which one would you choose?

That was the question posed by Spruce Mountain High School freshman Camryn Berry to Janet Ventrella's fifth grade class at Livermore Elementary School on Feb. 27. Berry, who suffers from fibrous dysplasia, gave a presentation to the students about her struggle with the disease and how it has affected her and her family.

Friday, Feb. 28 was Rare Disease Day. Berry explained that rare diseases are those affecting less than 200,000 Americans, such as fibrous dysplasia. The disease is an abnormal bone growth where normal bone is replaced with fibrous bone tissue.

Berry told the class about all of her hospital trips, scans, surgical procedures, transfusions, and medications. Her journey began on July 30, 2005, when her mother, Tammy discovered a hard lump on the roof of her mouth. A CT scan was done, and x-­rays as well, to determine what was wrong with Camryn.

“Have you guys had x-­rays?” she asked the class.

In one of the slides that Camryn showed, she was in a hospital bed with a teddy bear. One of the students asked if the bear had to have surgery as well. “We had to put an ice pack on the bear, too,” said Tammy.

The class learned that fibrous dysplasia isn't a form of cancer, but it is very rare and has no cure. Camryn's tumor was the size of a baseball, and she handed the students a baseball to give them some perspective of the size.

Before the presentation, the fifth graders had read “Wonder,” by R.J. Palacio. In the book, the main character, Auggie, who has a craniofacial abnormality, receives a standing ovation after winning a medal for strength and courage at the end of the school year.

Camryn remembered the time an adult asked her “What's the deal with your face?”

“It  hasn't been that much of an issue with bullying,” she added. “I just think that some people aren't aware.”

In spite of all the hardships Camryn has had to deal with, there have been many positive moments as well. She recalled how much she enjoyed the art and music therapies at one of the hospitals she was at. Camryn has gone to Children's Craniofacial Association retreats, for children with facial conditions, and made new friends. While she was there, she went to an aquarium and saw a magician, among other activities.

On June 28, 2013, she and her family attended one of the retreats and all of the children got together to make a standing ovation video for R.J. Palacio. At the retreat, Camryn met Spencer Kane, an actor/singer for an anti-­bullying campaign inspired by Wonder. Later, he interviewed her as part of the campaign. His motto: “Be one of the Kind.

She said that she loved going to Hole in the Wall Camp, for children with medical problems, and made many friends there as well.

Last year, a group of girls from Canton, Georgia that have a book club called The Princess Generation contacted the Children's Craniofacial Association after they read the book. They learned about Camryn and what her favorites were. One Direction is her favorite band and the girls in the book club gave her a standing ovation in the video with the One Direction song “What Makes You Beautiful” playing in the background. At the Dempsey Center in Lewiston, Camryn did a photoshoot with a mask she created not to cover up the tumor, but to celebrate it.

“After all, it is part of what makes me me” she said. “It's taught me how generous and supportive people can be.”

“But hey...I'm not complaining,” she said. “You can't exactly blend in when you were born to stand out.”

Camryn attended Livermore Elementary School, and Ventrella remembered her in class. “When I had Camryn in fifth grade, she was so positive,” she said. “Look at everything she's experienced in her life. She's so positive today. Making that connection with Auggie today was really important.