Then & Now - by Christian J. Hadjipateras

by Christian J. Hadjipateras

These are unprecedented times with the majority of countries around the world still in the midst of some form of lockdown. It is hard not to think of those who have been directly affected. Some have lost loved ones, while those on the front line are effectively sacrificing themselves for the sake of others. Mental health, which even today still has a stigma attached to it, has rightly come to the forefront of people’s minds and it is only positive that groups dedicated to this subject are continuing to spring up.

Another stigma, which I can write about from personal experience, is towards those born with facial differences. As with mental health though, we are moving forward in society with this as well. When I was born in the early 1980s with severe craniofacial anomalies (craniosynostosis, a bilateral cleft lip/palate, hypertelorism, among other issues), such support groups were virtually non-existent. My parents, still only in their late 20s when I was born, had no real support. My mother still remembers walking me down the high street and the looks people would give when they saw me. Even when I was a few years older, there were comments from tactless adults, never mind children. This was London; a society you’d have thought was generally educated and sensitive. But back then – and it really wasn’t that long ago – things just weren’t the way they are today and we should all be thankful that nowadays things are very different.

While I can’t say I was fortunate to have undergone 50+ surgeries in my life, I was nevertheless extremely lucky to have had parents who left no stone unturned in getting the best care for me and a sister who was a rock by my side during my difficult years of adolescence. My surgeries saw us travel to Paris, where I was operated on by the father of craniofacial surgery himself, Dr. Paul Tessier. He laid the groundwork for future reconstructive surgeries. I had my nose reconstructed by Dr. Gary Burget and Dr. Robert Walton in Chicago, two surgeons at the top of their game. My last major surgery was done by Dr. Henry Kawamoto in Los Angeles back in 2005 when I was 21; the age Dr. Tessier predicted I would finish by. Having experienced having these surgeries both in Europe and the US, it was always interesting to compare the two. I would say that the most notable difference with the two was conservatism in Europe (with the exception of Dr. Tessier), particularly the UK. The US surgeons were more likely to take calculated risks, which was mainly why we ended up travelling there because in my case risks needed to be taken.

My 20s were a real learning curve, but felt pride that I went to university and eventually graduated. Coupled with that I also achieved my aim of living in Los Angeles for a couple of years where I worked in the film industry. I always felt that because I essentially spent most of my childhood in hospitals that I was playing catch up and so in a sense, looking back, I feel that I in some ways lived my teenage years in my 20s. It was only when I got to about 26 that I felt happy within myself and this brings me to the main point of this article. During my teenage years and into my 20s, I opened up very little to anyone about my fears for the future and whether I’d ever get to where I wanted to be. My lack of confidence, especially in social situations, took its toll on me at times.

If anyone reading this can relate to not opening up to others, whether it be your family or friends, I can’t emphasise enough the importance of doing so. I know now how much easier things might have been for me had I done so. For those of us who have been stared at, it isn’t easy. Personally, this happens rarely compared to when I was growing up, but now and then I still get those eyes darting at me if I’m walking down the street, or at a bar or restaurant. If it goes on to the point where I’m irritated, initiating a staring competition usually does the trick. When it comes to children though, they might stare out of their innocent curiosity and I always find that smiling at them results in a smile back from them, which is always a feel-good action. We all have our different ways of responding, but I like to believe that in today’s world things are better for us with facial differences.

These days, I am living in Greece and trying to forge a screenwriting career. Writing has always been a way for me to express myself and thanks to my wonderful wife, who has helped me with my confidence in all aspects of my life, I’m hoping that my current project will go from script to screen in the not too distant future.

Finally, I’d like to ask any of you reading this to support the Children’s Craniofacial Association (CCA), an inspiring organisation, which I’m really looking forward to working with. Next week is the start of the 2nd Annual Face Equality week (May 17^th-25^th), with North America celebrating "Face Equality Day" on May 19, 2020, where Face Equality International will drop a video from faces and voices around the world describing what face equality means to them. I encourage everyone to check out CCA’s site, and the wonderful work it does for children and adults living with facial differences.

You Name It. I Overcame It: My Final Crouzon Surgery

Editor's Note: This article written by Ysa De Lauro was originally published in her student newspaper for their features section series "You Name It, I Overcame It." She shares with us one of the last major surgeries she had and how she made it through with a smile on her face and courage in her heart. 

By Ysa De Lauro

Be Brave. Be Strong. Be Fearless. These words are embroidered upon an artsy throw that my family gave me. These are six simple words. Together these phrases produce quite a motivational message. My name is Ysa, and I’m a junior here at South. Like most teenagers I have had my share of challenges. Mine include being born with Crouzon syndrome, having severe to profound hearing loss, and struggling with typical insecurities like doing well in school and finding the right college.

Well here is my story. Waking up the morning of December 13th was exciting. I had waited patiently for seventeen years to come to the end of my series of surgeries. This surgery marked a milestone. I counted it as my eighteenth and nineteenth surgery. What this day meant to me was that I was almost done. I was relieved and excited. Surprisingly for such a major surgery, I wasn’t nervous. I was energized and eager. At seven in the morning, we headed to the hospital. It was my mom, my dad and me. We checked in the hospital. Ironically, I had just been there eight days before due to an endoscopic nasal surgery. That was a simple procedure compared to this one.

I waited patiently. I was all smiles anticipating the outcome of this day. They called me back to presurgery, took my vitals and added another two bracelets identifying me and my allergies. I changed into a pale blue hospital gown and dressed my feet into fuzzy cat socks, which I got plenty of compliments from. I met with the administrating nurse that gave me a synopsis of the two upcoming procedures. The first was a tumor on the right side of my forehead that resulted from a surgery when I was two. There was a hole in my skull, which the neurosurgeon would repair and use a bone graft from skull. My second procedure was a midface advancement of twelve millimeters. This would drastically change my bite and overall appearance. Altogether, these procedures would take approximately nine hours.


Shortly afterwards, I had two IVs (in the vein) and one arterial line (in the artery) administered. This to me is the most stressful and scariest part. I absolutely hate needles! So to me the worst was over. Well, kind of. Now, I was wheeled off to surgery. This is what I remember from that day.

However, ask my parents their version of this story and they would have a very different one. My parents would sit in the waiting room, worrying and anxious. After the first hour or so, my craniofacial specialist came out to inform them that the first surgery was going well, but and here is the but, the neurosurgeon insisted that they would have to shave my head. This was devastating news to them as they had no prior knowledge and greatly feared my reaction.

My hair had been my pride and joy. I used to love styling it and I used to love buying new products that changed the texture of my hair. It was something I looked forward to every morning, deciding what hair style I would wear for the day. My mom asked me while in the hospital if I wanted to wear a wig, but I said no. Because the girl with the long hair was gone. Because I realized that I didn’t need to hide behind my hair anymore. Because after looking at myself for the first time in the mirror at the hospital, I didn’t see myself. Instead, I saw this beautiful, strong, confident young woman that wasn’t afraid to show the world who she was. My short hair exposed all of my scars from my previous surgeries, so I was able to show the world all of the battles I have fought. This surgery has helped me find my inner beauty.

Then the second punch in the stomach, if the craniofacial specialist couldn’t advance my midface out enough, they would need to attach a metal contraption called a halo. This would be an external device that I would wear for approximately three months. I had this when I was five. Again, this was the first time that this was discussed. So my parents agonized over the news and did their best to be patient and calm. The neurosurgeon eventually came out with the news that the first procedure was complete and successful. So now it was the craniofacial specialist’s turn. The incision was ear to ear (kind of like a headband across the top of the head) and he was to cut through my midface, free it and advance it twelve millimeters. He would align my teeth and then set everything in place with four titanium plates.

Somewhere during this procedure, another specialist entered the picture. It was the ENT. When the craniofacial surgeon exposed my nasal cavity, he had retrieved the ENT. It was only eight days prior that the ENT had attempted to remove a polyp that was in my left cheek. He had been somewhat successful, but was unable to remove it entirely. Well with the cavity exposed, the ENT removed the entire polyp. This was a bonus and meant that I would not have to proceed with the surgery that was tentatively scheduled for the upcoming summer. The surgery ended about nine hours later. All three procedures were successful and now the tough part: recovery.

Still unconscious, I was wheeled into ICU. The plan was that they would keep me unconscious for several days. The thought was that they could control the pain and give my body a chance to start healing. Well, that was the thought. However this was not the case. During the night, I became quite agitated. The night nurse said that was common. At 5:30 a.m., I began to gesture and my dad immediately stated that he thought I was trying to write something. Understand that my eyes were swollen shut: I was hooked up to a multitude of machines. There was a main drain coming out of my head. In addition, I was intubated (meaning I had a huge tube in my nose to help me breathe) and my mouth was fastened shut with heavy rubber bands that were attached to my braces. I had no way of communicating. My dad rustled up a paper and pen. I wrote, “I can’t see.” The nurse was astonished as were my parents as I was to be in a sedated state with no recollection. Obviously this wasn’t the case. I was aware of what was happening. Actually I feared that I might be blind. My parents later admitted that they shared those fears.

So this was the beginning of several stressful days. My pain was regulated by an endless series of medication. I communicated my concerns and fears through pen and paper. I wrote, “Will I ever get better?”, “No more surgeries. It hurts.” and “Are we leaving today?”. I struggled with the idea that I wouldn’t be able to see (my eyes were extremely light sensitive) and swollen shut. They attempted to extubate (remove my breathing tube) without realizing it was sutured in. One of my IVs was compromised so my hand literally blew up the size of three normal ones. Then I came to the realization that my hair was gone. My head was wrapped up. My parents said they were dreading this conversation, but was amazed at my calm reaction and grace at this news.


So fast forward, five days. Four days in ICU and one day in step-down ICU, and after some serious pleading, I was discharged to go home. Life was good. No, life was great. I was going home. I had severe swelling in my face, my mouth was fastened close, and numerous scars exposed from this surgery and the past. I was the spitting image of the character Eleven on Stranger Things. I was scrawny (living off of liquids which I ate through a syringe), had a fresh crew cut (thanks to my neurosurgeon), and a constant drainage of blood through my nose.

So why am I sharing this story? What did I take away from this experience? I learned that my hair didn’t define me, even though previously it had been my pride and joy. I learned that my family, my friends and my supporters are truly precious. I learned to be strong and stand tall when faced with constant questions and stares. I learned that by sharing my experience, I have encouraged others to find their own strengths. I have learned that I can endure. I have learned that I am indeed, strong, brave and fearless. I am hoping that you too will learn that you are stronger than you realize.

Words of Wisdom: "I focused on overcoming great adversity"

By Frederick Seitz

In 1992 just hours after I came into this world, the doctors left my parents with the same message every time they gave them an update on my progress. There was very little chance I would make it through to the next morning. The doctors questioned the quality of life I would have if I survived. Little did they know a lifetime journey had already begun. 

Ever since I was a kid, I knew I was different from everyone else. I have had my share of experiencing bullying and teasing during grade school many years ago. Along with that, people would stare at me in public and schoolchildren would either run away from me on playgrounds or just stare, not knowing how to react to someone their own age who looked uniquely different. It took a while to get used to as a kid and I developed a strong mind before most of my peers because I knew that when I got older, my parents wouldn’t be everywhere with me. I have also experienced discrimination within the education system especially in grade school. I was finally placed into my hometown district after 4th grade and everything changed past that point. 

Around the time I went into my teenage years, I learned to simply not care what people thought of me and I focused on overcoming great adversity. Some of that included the surgeries throughout my life, some intense and some modest, and dealing with people who got in my way of building my own path to success. Luckily, there were good people along my journey who helped me in ways I couldn’t possibly repay them. They’re the reason where I am today.

From that point when I was placed into my home district, my academic success accelerated rapidly well into high school and college. I built many friendships and significant connections. My life transformed because I took control of my own destiny when I was only 10 years old. It wasn’t clear at first but looking back, I know why I did not leave this world. I am living on borrowed time for a purpose. I don’t know what your spiritual belief is but I know it is God’s will for me to be the master of my own journey, my own destiny. Life is a road and the destination is only up to whose road it is. I do not believe there is such a thing as fate. You cannot control what obstacles you will face but you can prepare if you can see them soon enough. It is your steering wheel. No matter how impossible it seems, there is always a detour. Absolutely no one except yourself can stop you. There is always a way so go find it. A perfect example to resonate this idea is this quotation from one of my role models, Steve Jobs:

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

That really sums it all up. 

Living with Goldenhar Syndrome does make me rare because it is a rare condition but the force of determination my soul contains is more unique and unprecedented. That is what set me apart from the others. My body is a physical vessel that’s just different from most people. I am still here and looking forward to what’s coming next on the road.

Sign up for Surgery Support Today!

New link, new look for our surgery sign up. We are now using Google forms to capture your information for surgery care packages. If you signed up, send us another request through this new link, and we will send your son, daughter, or loved one a care package when they have surgery. 

Thank you so much for bearing with us through this transition. 

In the care package, your loved one will receive for a "Get Well" card, a care package, or a call of support for you, your partner, or your child! We will work to match your needs with our resources, to help you get through the experience feeling loved and supported. 

Sign Up Here!

New Surgery Care Package Sign Up Form!

New link, new look for our surgery sign up. We are now using Google forms to capture your information for surgery care packages. If you signed up, send us another request through this new link, and we will send your son, daughter, or loved one a care package when they have surgery. 

Thank you so much for bearing with us through this transition. 

In the care package, your loved one will receive for a "Get Well" card, a care package, or a call of support for you, your partner, or your child! We will work to match your needs with our resources, to help you get through the experience feeling loved and supported. 

Sign Up Here!

Calls, Cards and Care Packages Oh MY! Sign up Today!

Is your child having surgery? CCA wants to be there for you and your family.

You can sign up on this page for a "Get Well" card, a care package, or a call of support for you, your partner, or your child!

We will work to match your needs with our resources, to help you get through the experience feeling loved and supported. 

Martha's Vineyard Mother and Daughter Petition Fight for Insurance Legislation

Photo Credit: MVTimes.com

Just when I thought I could not love Martha's Vineyard more, I read this story and my heart burst open for my favorite island off the coast of Massachusetts. A mother and daughter, Ann and Criss Quigley, of South Hadley in Western Massachusetts,  and West Tisbury,  on the Vineyard, worked to create proposed legislation to have insurance companies cover medical and dental expenses for people born with congenital craniofacial conditions. The Martha's Vineyard Times quotes Quigley as saying,  "We hope our state legislators can close the loophole that allows insurers to deny coverage for treatment of medically necessary reconstruction for disabling craniofacial birth defects simply because they happen to affect the mouth and teeth.” All of which could not be more true. 

If you live in New England, or even if you do not, write letters in support of this proposed bill. If we can make it happen here in Massachusetts then maybe it can happen in your state, too. This is a story of hope. I hope you see and feel that hope through the Quigley's great work. 

Read more about it here in the Martha's Vineyard Times. 

#ThankfulThursday: Many Thanks To Our Doctors

We are thankful today, on this #ThankfulThursday, for our doctors. This post has two videos, one from Children's Hospital Colorado  and the other from the London Craniofacial Unit in the United Kingdom. 

Dr. Gregory Allen clearly states and shows in this video his passion for the work he does for kids with craniofacial conditions, especially cleft lip and palate. Many thanks to the American Cleft Palate-Craniofacial Association for sharing this on their Twitter page. 

Below is the second video from London describing Apert's Syndrome and the impact it has on the child. 

Ask The Doctor: Bone & Gingival Graft with a Periodontist

Earl Gage, MD

Kids Plastic Surgery, Mercy Children’s Hospital – St Louis, MO

Question: Our child is being referred to a Periodontist for a second bone graft and gingival graft for the upper front teeth. We have been told this is a more delicate surgery than the initial bone graft that the plastic surgeon performed 2 years ago. What kind of questions should we ask about the surgery and determining which doctor to use?

Answer: Thanks for your question. I presume from your question that your child had a cleft lip and palate and that the graft 2 years ago was to close the cleft in the alveolus or gum line. There are certainly times when re-grafting is necessary. Sometimes the first graft fails. Sometimes the graft “takes” but there is insufficient bone to allow a subsequent desired procedure, such as placement of a permanent dental implant. More often than not, the re-grafting procedure is essentially the same as the first surgery. With any bone graft surgery, it is critical that there be healthy soft tissue to cover and protect the graft as it integrates. Ideally, we want a water-tight seal around the graft. If the incision pulls apart or if there is a persistent open connection from the nose or the mouth into the space where the graft was placed, the graft is likely to become infected and fail.

Since children with craniofacial and cleft problems are more complex to manage than children without these types of diagnoses, I would first recommend that you ask your periodontist if he or she has experience in doing these types of procedures in kids with similar diagnoses. Experience and judgment matter. Secondly, I would be a little nervous about bone grafting and gingival grafting being done at the same time if the gingival grafting procedure will result in other incisions and soft tissue disruption near the site of bone grafting. Again, you want healthy soft tissue and a water-tight seal. Anything that may compromise this type of closure needs to be carefully discussed. I would spend some time talking to your periodontist about what’s involved with gingival grafting and whether it may put the bone graft at risk. Finally, once you meet with the periodontist, I would recommend you discuss the plan with your craniofacial surgeon to make sure they feel it is safe and makes sense.

Best of luck!

#ThankfulThursday: Overview Talking to Your Child About Upcoming Surgery

Summer is upon us. For all of us this means more time in the sun, but for some of our kids this means time for surgery. Summer provides ample time to recover without missing any school. This time of year is a great time for families to review one of CCA's new overviews called "Talking To Your Child About Upcoming Surgery" You can also view images of the document below.

Additional overviews on craniofacial conditions and other useful medical information can be found at the CCA Kids website. All of these overviews are written by expert physicians and clinicians, featuring top-quality information about well over a dozen topics.

We are grateful to all those who contributed to these publications to help our families stay informed.

-By Kara Jackman 

How I Respond To Questions and Bullying

By Rasheera Dopson

Rasheera was born with three very rare syndromes. VATERS Syndrome, Hemifacial-microsomnia Syndrome, and Golden Har Syndrome. These syndromes caused her to be born with several facial and bodily deformities—resulting in 101 surgeries in my life. Rasheera Dopson lives in Atlanta, GA. Her mission is to empower young men and women in the areas of self-esteem and confidence.  In her spare time she enjoys blogging, watching 90s sitcoms, and volunteering in her local community. Please check out her contributions to The Mighty for more of thoughtful reflections.

When people asked me the infamous question “what happened to your ear,” my mom would always tell told me to tell them. “I was just born like this way”— a phrase that followed me throughout my school-age years.  I hated that question. Even more, I hated my response because, most of the time it didn’t work. Nothing really worked when it came to people questioning me about my facial difference. I always wanted to avoid these situations, but they just kept happening.  

When I was younger, I’d constantly get the stares, the whispers, the glances and glares from other children. Some kids would even be so bold to ask to touch my ear. Of course, I would jerk away, and say a stern “NO!”As always, I would handle the constant questioning by nonchalantly nudging it off, and saying my familiar response, “I was just born like that.” At other times, when it would really hurt, I would go home and cry in my Mom’s arms. It was hard being different as a child and having to deal with other people’s reactions to your face because you are not taught to how to deal with being teased about something out of your control.

People tend to think that once you’re an adult the teasing and bullying stops. I wish that were the case but it’s not true. Although, young kids are more open about their teasing—you know how kids are, the laughing and pointing of fingers.  Adults, on the other hand, are much more coy.  They won’t outwardly ask a question, but you can tell that their minds are turning. Wanting to ask the question “what happened” but never getting the courage to say something because they don’t want to be offensive. Adults may never ask out loud, but they do silently judge.

I’m not sure which version of these judgments is worse, the silent judgement, or the open jokes and questions. I once had a friend in college tell me that one of my classmates referred to me as “crooked face” whenever I left the room.  That hurt. It hurt to know that people were calling me names behind my back and it hurt to know my so called friend didn’t correct him. It hurt to know that people had such a limited perception of me because of the way I looked. And for a long time I embodied those words. I let the words, the stares, the judgements, the teasing of other people break me down that I began to harshly judge myself. Saying silently that I wasn’t smart enough, pretty enough, normal looking enough.

Thankfully, I came to a point where I got tired of feeling sad every time someone stared, called me a name, or judged me too quickly. I made the choice to take responsibility for my difference. I couldn’t sit and sulk around every time someone would ask a question about my ear or tease me.  This was going to happen regardless, and I couldn’t let their ignorance stop me from living my life. What I could do was control my reaction to the judgements and set mental and emotional boundaries. For example, in work settings in order to alleviate assumptions I put myself out there and I make it known to my fellow employee’s and boss that hey I’m a little different and I do have some limitations but this is what I can do and this is what I cannot do.  In social settings I surround myself with people who know me and are comfortable with me. One of the worse things that can happen is when you have a person around you who is uncomfortable with your difference.  When I’m out and hanging with friends and family I don’t have to answer questions about my face or ear. My friends and family around me know me and they don’t make concession for me or make me feel like I’m different.

 I’ve realized in my life that there will be people who will understand and embrace your difference, and then there will be those people who will never get it. However, I don’t get bent out of shape for those people who will never accept or embrace me. I’ve learned that they are not worth having in my life. I’ve learned a very important lesson in life and that is you have to surround yourself with people who see your value as a person, and not just a face.

From the Bench with Francis: Seattle Children's New Technology for TCS

From the Bench with Francis
A regular column on craniofacial news and technology by Dr. Francis Smith

Craniofacial surgeons at Seattle Children's Hospital have devised a radical new surgical approach to opening the airway in children with severe form of Treacher Collins syndrome (TCS).


Like many other craniofacial syndromes, TCS involves anatomical disruption of the airway due to malformations of the mandible (lower jaw) and other structures that result in dangerous, and often fatal, obstruction of the upper airway. Consequently, children with more severe forms of TCS need tracheostomy to breathe until they can have some form of jaw surgery later on to open their airways.


For over two decades, the standard paradigm for opening the TCS airway has been to bring forward the mandible (and with it, the tongue), either by cutting it apart and repositioning or realigning the jaw with rib grafts, plates, screws, and other hardware (called orthognathic surgery), or in more recent years, by a gradual process of distracting the jaw forward with internal or external distraction hardware that is turned daily for weeks or months postoperatively until the jaw is sufficiently lengthened (this is called mandibular distraction osteogenesis). However, jaw lengthening has a poor success rate.


However, a team of craniofacial surgeons at Seattle Children's Hospital have recently developed a completely new approach to opening the airway in children with severe TCS. Plastic surgeon Dr. Richard Hopper (surgical director of Seattle Children's Craniofacial Center) and his team redefine the syndrome (and its airway obstruction) as actually a rotation deformity of the entire face, not a lower jaw problem. Their experience with severely airway compromised children with a rare form of craniofacial microsomia whose faces were rotated backwards, cutting off their airways so they were no longer able to be helped with tracheotomy, drove the team to devise a new surgical approach--rotating their faces forward in order to open their airways--which they soon adapted to children with TCS.


Called "subcranial rotation distraction," this is a three-stage surgical process taking a year and occurring after growth of the upper face has finished (age 9 and older). In the first operation (the most complex one), the child's entire face is cut free of the skull base (so the whole face can be moved forward as one unit), the jaws are wired shut, and a metal hinge is created at the top of the nose so that a midface distraction device, paired with mandibular distraction devices, can be attached in order to gradually distract the entire face forward over a period of weeks to a month after the initial surgery. During this distraction process (while the devices are activated a little each day), new bone develops and grows within the gradually widening gap between the advancing face and the skull base. Once Dr. Hopper feels that the face has been distracted or lengthened forward enough, the daily turning of the screws stops while the new bone tissue hardens forming a longer upper and lower jaw. After a while, the second surgery involves simply unwiring the jaws so that the child can open his or her mouth again. The distraction apparatus remains in place for two to three months more while the bones continue to consolidate and harden, then in a third surgery, these devices are all removed (and new cheekbones are built from skull bone grafts).


During this whole yearlong process, a tracheostomy and feeding tube remain in place.



Dr. Hopper and his team consider their radical process a greater success in opening the airway because it moves the whole face forward and provides greater stability than merely lengthening the lower jaw, which so often relapses afterwards. He continues to monitor the growth outcomes of the new procedure in his patients through their teen years. His hopes are that the evidence of the success of the new approach will bear itself out and eventually spread nationwide as other craniofacial centers see its success.

Mom To Mom: A Hug in the Parking Lot

By Xanthe Alyse Chefurka Faulkner

This is a repost of a blog entry from September 23, 2015. It resonated so much that we felt we should post it one more time!  The post was originally found on one of the craniosynostosis groups on Facebook, and graciously, the author, Xanthe Faulkner, agreed to let me share it on our blog. I believe it's a succinct and beautiful peek into the lives our amazing cranio moms and dads, and a great example of why family networking is so critically important and part of the work we do at CCA Kids. 

Why we cranio families are who we are...

So Helmetbaby here is in daycare. And the day he started, 4 months ago, I looked at a boy in his class and thought "Saggital. For sure." But you know how it is - I never crossed paths with his parents, don't know the family, maybe he's already being followed, etc... But we're very public about our son's journey, so all the staff know us and the details of our little guy's condition and journey.

So this morning I was carrying my son across the parking lot towards the school. And a woman I don't know calls to me, softly, and comes over. "I need to talk to you," she falters, "I'm so happy you came just now. The teachers said I should, that I could..." And tears well up in her eyes, and I knew right away. With my son cradled in one arm I wrapped my other arm around this stranger and held her tightly. Of course she was the other little boy's mom, and she had gotten CT confirmation of fused saggital and metopic [planes of the anatomy of the skull] the day before. "I'm so upset," she said, soft spoken and shocked, "I never expected. I'm beside myself. I forgot all my groceries in the store yesterday. I'm so distracted and scared, I don't know what to do."

She doesn't have Facebook to get support from you all, she hasn't even met with a neuro[logist] yet, but I gave her my number. We'll have coffee. I told her my son was fine, more than fine, and that while it had been scary, the results were fantastic. That everything will be okay. And guys, I felt so clearly... That we as cranio parents are the only ones that get it. The sudden fear of realizing they will have to cut your child's skull open and piece it back together. The terror of things going wrong. Worries about their little growing brains. The unknown. And I thought about how people who understand first hand are the only ones who seem to bring any comfort sometimes. You can't fake having been there. And once you've been there, you are driven to reach out to others standing in the new fear,

To hug them in the parking lot,

To whisper,

"I know."

Thank you all for being that for me and so many other families. 

Thank you for teaching me how to be that for others. XO.

Boston Children's Hospital Apert Symposium 2016

We were so thrilled to be a part of the Boston Children's Hospital Apert Symposium 2016. You can read more about the experience here. See an excerpt and some photos below, courtesy of Thriving, the Boston Children's Hospital Pediatric Health Blog.

Madilynn & Dad, Rocky from BCH

"For some families in the waiting room on the day of the Apert syndrome clinic, it’s a reunion. For others, it’s a revelation. Coming to Boston Children’s Hospital from as far away as China, some have never met another child with Apert syndrome. Before long, parents and kids of all ages and ethnicities are taking group selfies as the younger children run around and play.
“These kids have the brightest smiles, they’re very resilient,” says Tambra Milot, mother of 3-year-old Madilynn.
Each year, the clinic sees about 50 children with Apert syndrome, a rare genetic disorder in which the skull, face, hands and feet develop abnormally. The clinic is held at least twice a month, bringing together the specialists each child needs to see. Today, families are also here for the weekend, to exchange information and learn about the latest research at Boston Children’s 2016 Apert Family Symposium."

Perspective

Today we have a guest post from CCA Mom, Liz Anderson. Her words ring true and we think you will truly enjoy her thoughts on "Perspective."

We all have our stories and our struggles; some of us as patients, others as parents, some as siblings, and others as supporting family and friends.  Especially in the beginning or in the midst of some new test, procedure, visit to a doctor, or surgery, we all feel like our experiences are the most dramatic or the most complicated.

With each new challenge or procedure, we can all get that drowning feeling. It overwhelms us every time, only to look back after-the-fact and think about how we have overcome that obstacle, and although we know there are more, we can continue to thrive each time.

Everyone views an experience or lifestyle with their own unique perspective, and those new to the experience can feel like they have so far to go. Thankfully, perspective tends to change over time, which in essence, allows us to move along with our medically and socially complicated lives in a smoother fashion.  I remember when Nathan was born, so many doctors visited us to tell us about all of the things that we would be able to “fix” about him as he gets older.   “Fixed,” was the word they used, as if he were broken.  Dave and I clung to each other, nodding our heads, still in shock, and truly believed every word these doctors told us. We were new to this entire world, and we had nothing else to base our opinions on, but the advice of doctors who were out of their realm with this rare infant in their nursery.  We told ourselves, “It would be ok.  It can be fixed.”   But to tell you the truth, we really only told ourselves that because we were in complete shock and totally clueless. Truly, all of these opinions, all of these thoughts and feelings, really boil down to one subjective word...Perspective.  At that time, we had none.

“The best view comes from the hardest climb-- Unknown”

Isn’t that the truth? I spent the first two years of Nathan’s life researching all of the procedures available and at what ages they could be performed.  I read medical journals and poured over research studies.  Admittedly, I was completely obsessed over all of the details involved with them, that it took my focus away from raising my little boy. Then, Nathan started having more procedures to his palate and eyes after an infant jaw distraction.  After seeing my baby in pain, seeing him struggle to come out of anesthesia, learning more about the complications involved with being put under anesthesia, and watching what other people went through with their children during surgeries, I decided to take a step back from obsessing over the details.  My perspective changed, not from what anyone said to me specifically, not from someone’s thoughts on the best surgical method, but by holding my child’s hand and watching him overcome that pain, coming out of that rough time stronger and more equipped to conquer the world.

Fast-forward six-and-a-half years, seven surgeries, hundreds of appointments filled with numerous procedures and expert opinions later, and now I’ve got a child with his own perspective; opinions I did not think about when he was an infant. He is helping our whole family to grow and once again widen our tunnel-vision a little more to include his input and thoughts, which, at times, are starkly different than ours.  Hearing his thoughts helps me to understand and appreciate others when they share an opinion that may differ from mine.  Hearing him speak so confidently about his own body and his struggles with surgery, made us stop in our tracks and realize that this is his journey, and we are just the drivers. That is the beauty of the scope of perspective, and how each new piece of information, feeling, and experience helps to mold us and deal better with the challenges that we know will certainly come our way.

Unfortunately, perspective can be a double-edged sword. With all of the message boards available on Facebook and social media, diverse opinions are available to support or shut down absolutely every current practice or belief in the craniofacial world and any other conditions that so many people are dealing with.  I have always appreciated those open forums through these boards, but they certainly can become overwhelming, especially when members start to argue over a point that can throw a new parent into a tailspin, not knowing which end is up.  While we with young children all truly appreciate the support from those who have trudged ahead of us, there can sometimes be this attitude of “you haven’t seen nothin’ yet,” or “at least your kid hasn’t had to …., “ The worst is “It’s not in your child’s best interest to…..”  

I must admit, that I’m guilty of this, on many counts, at least in my mind.  I remember having come home from the hospital with Nathan after his cleft palate repair.  He was eight months old and came home with an NG tube up his nose for feedings and hundreds of stitches in his mouth.  He couldn’t sleep well, he couldn’t breath easily, and he bled for days.  I would have to hold down his little arms while he screamed at the top of his lungs as we had to keep putting the NG tube back up his nose that he had pulled out for the ninetieth time that day.  Needless to say, it was an overwhelming time in our house.

At the same time, I specifically remember a friend posting on Facebook that her son cried in the doctor’s office when he got his two immunizations, and that she did too, knowing that the shots had hurt.  Her heart was completely broken.  I imagine now, that if you walked in the room at the moment I was reading that post, you would have seen fire coming out of my ears.  It made me angry and bitter that her biggest problem at the time “merely a shot.”  It took every part of me not to type a nasty comment back telling her how much worse it could be and that she should just suck it up.  But, I came down from my anger, and I thought to myself that our perspectives are so different. That experience for her was awful, just as my current one was.  She didn’t need me to tell her how much worse it could be;  she just wanted us to listen and relate.

And I also know that many of you who read about our palate repair at that time, would have thought the same thing about me -- that this too shall pass, and it will all work itself out in the end. That’s perspective helping us to change and grow, and there are some times when we just want to be heard for the sake of being heard, and we want someone else to say “Yes, this is hard.  Yes, this is a very difficult decision.  No, there is no correct and perfect way.”  And what a blessing it is when that happens! In those times when we don’t have much perspective and our tunnel vision is in full effect, a healthy support system like the Children’s Craniofacial Association (CCA) is paramount for helping us to grow, change, and learn from the oh-so-stressful experiences that we are having either ourselves or with our children.

At an early stage in Nathan’s life, I wove myself into an incredible support system of moms in the same place as me and a few steps ahead in their craniofacial journey.  I became an active member of CCA and I saw how others handle their pain.  I learned that life can be a complete and utter JOY, all without being explicitly told what to do by any of them.  I watched, I read, I cried for them, I prayed for them.  As a family we continually discuss what these other people are dealing with together, and how we will feel when we are in that same boat.  I have been held up by these mothers and CCA members, and was allowed to let my perspective evolve and change, and I am so appreciative of all of it.  I don’t know where my family would be without these amazing people in our lives, and how differently we would look at living a life with a medically complicated path.  I do know for a fact that we would feel alone, confused, and probably overwhelmed.  I also know that our son is young, and we still don’t have the “best view.”  We have more hurdles to get over, more mountain to climb, and more bumps in the road.  But now, our ever-changing perspective allows us to  know that when we are in the thick of whatever is plaguing us at the time, that we can find someone, somewhere in this group to help us take a step back and gain the perspective we need to trudge through, and  eventually, we can become someone that new scared parent looks to when they are in need for a fresh and necessary, broadened view.

Happy #CAM2016 from Joe DiMaggio Children's Hospital!

The Craniofacial Team at Joe DiMaggio Children's Hospital wants to wish you a HAPPY #CAM2016! They were our featured Symposium speakers at our Retreat this year and we are so glad they joined with us this September in celebration that #DifferentisCool! Thank you team for this great video!