Saturday, July 20, 2019

Panic at the Meetup: Medical PTSD is Real




Kara, the author, and Katie Whicker

By Kara Jackman
Maybe my mother was right. 


Shallow breaths, and a slick of sweat broke through covering my skin hidden underneath my new, favorite, polka dot tank blouse and burgundy cardigan. The walls of the room were closing in fast now. My stomach twisted itself further into an even tighter knot. I had to get out of here. Quick. Think. Make it look methodical. Don’t look rushed. I looked at my watch, hoping that everyone saw me look at my watch. I took a few beats of time, picked up my backpack and walked out of the room with purpose. It was a few minutes early. Hopefully, it looked like I was headed out on official business and not fleeing the scene. I was supposed to be participating in the cleft lip and palate group meetup with others born with my condition at CCA’s Annual Family Retreat, but emotions, image after image, frenzied thoughts, comments, and pain overcame me. I was having a panic attack because of this very real PTSD I was experiencing. 


I got up to my hotel room. I don’t remember how, it just seemed to happen, the magic of adrenaline. I worked hard to calm myself down. Stripped out of my clothes. Tore back the sheets of the hotel bed, and laid down for some sheet therapy. Ice water, Altoids, and generic Pepto-Bismol tablets were on-boarded over the next twenty minutes. A soothing meditation played from Youtube. I breathed and breathed and breathed. What the heck? This was not supposed to happen. I have been to multiple retreats. Why was this happening?  Was this my stomach? Am I going to throw up? Or was it more?  I think it was more. 


My mom was right. I was wrong? How could that be?


My whole life I had wanted to be in that room. To be in a room filled with people like me, to know people that looked like me, and what my life was like living with a repaired bilateral complete cleft lip and palate. As a child, I wanted a group of people just like me to share experiences, pain, hospital appointments, and so much more. The trials and triumphs, as I like to call them now. Heck, I would have been happy to know just one other person with my facial difference back in the day. It would have made such a difference. But now, I could not handle it. Maybe my mother was right all those years ago, mainstreaming me with others kids, making sure my goal was to blend in, and only be acknowledged for my mind, artistic, and athletic skills. Maybe she was right, when in the car, with her music teacher hat on, we would rehearse speaking in a lower, chest voice, rather than my usual hypernasal drone. Maybe she was right about it all, while all along the way I had resented her for not letting me be..well, me. 


Maybe she was right. Maybe I was wrong. Maybe it was too late for me to revel in my clefted authenticity.


No. No! I had to be right. I had to be, I felt it in the smallest pocket of my aching gut. I had worked far too hard to get here, served on boards for a New England-based craniofacial nonprofit, volunteered my time and talents in that community, and finally ascended to do the same on a national level. I was right; I had to be in that room with my people, my cleft lip and palate group, because it was where I was literally born to be. This was my tribe. Now that I decided I was in the right place, how could I make it so I did not have a complete meltdown while my truth became reality? God knows, this was not going to be my last retreat. I work with CCA. Yikes, how was I going to pull this off? 


As I lay there in bed, I thought about it. There was only one way to manage this anxiety: I had to walk through it. Each and every day I had to slowly expose myself to those thoughts and images from the past that came racing through my mind in that room. I could do this through meditation, journaling, and speaking with my therapist. This was how I had overcome other difficult emotions and pain in my life. And this would be how I would tackle my panic when encountering my fellow cleft brothers and sisters.
Emily and I with our Birthday Club hats on
during Saturday's dinner dance.


While doing this internal work, I decided to continue to write and reach out to children whom wanted to be part of a craniofacial community. If we catch them early enough, the gifts of self-acceptance, self-esteem, and kindness would be part of their everyday lives. This work would prevent them from experiencing that wicked panic attack I just endured. Perhaps we could teach them that they were enough. CCA would introduce them to other kids with facial differences, so they could swap hospital war stories and bond over the latest games, toys, and movies. 


I had to do this work. My instincts were right, it was only my execution that needed some tweaking. I had to make peace with the fact that it was too late for my younger self to experience this way of life, but it was not too late for our kids. Overall, my hope, and the hope of CCA, is that our kids continue to share their story, speaking their truth out loud for all the world to hear. A truth that will allow them to live a life free of panic attacks and inner turmoil. The work we do with these toddlers, children, teens, and adults through our curriculum and other programming is vital in the prevention of low self-esteem, anxiety, and bullying.  The earlier CCA and I reached them, the sooner we could show them how to be vulnerable and how to be authentically themselves. 


Ohhh Yeahhh! I got this!
After all was said and thought, (and boy did I think a lot of thoughts), I decided I had work to do, now. I had to get up out of this bed, wash my face, and get moving. If I could help one little girl change how she manages her thoughts, emotions, and ultimately, her behavior, I will have made a difference. 


Let’s go!


Read more by Kara at http://www.thesearemywords.net

Wednesday, July 17, 2019

#ThankfulThursday: Dougans Raise and Donate Funds From Pop-Up Fundraiser

L-R: Kara Jackman, Marketing and Communications Coordinator, Brisa Dougan, Conley Smith, Bethany Dougan, Erica Mossholder, CCA Executive Director, and Khadija Moten, Outreach Director


Conley Smith and Bethany Dougan from Bonham, Texas donated $146.13 after hosting a pop-up fundraiser for CCA in honor of Brisa Dougan. These budding entrepreneurs sold hot chocolate and cookies to guests at a local boutique during a rare, chilly, spring day in Texas.  The funds raised will go to CCA Kids in need of travel assistance to access quality medical care, distribution of educational curriculum, and social support and networking.

Thank you Conley, Bethany, and Brisa for donating to CCA Kids. You were a breathe of fresh air during a hot day at the office in June. We enjoyed talking to you about your softball tournaments and our #ChooseKind library. 

Keep up your fundraising ways, so you can keep changing the world. 

Friday, July 12, 2019

30 Stories 30 Faces 30 Years: Macey Atkins



Our family is proud to be a part of CCA because they help families like ours every day. When we felt alone and did not know a lot about Macey's condition, CCA provided what we needed. They provided informational resources, emotional, and financial support. Because of CCA we've connected with many families. We support each other through our everyday obstacles and provide resources through our experiences. CCA has helped educate the world about craniofacial anomalies. Because of their mission to spread awareness, countless children are receiving the appropriate diagnosis and getting medical attention early. 
-Stacey Atkins, Mother of Macey Atkins


Macey, and her mom, Stacey Atkins live in Zachary, Louisiana. Macey has been a part of our CCA family since she was born. Now, sixteen years later, Macey is a rising sophomore at Zachary High School who enjoys cheerleading, swimming, traveling, and all things fashion. Her true passion is dancing, which she has been practicing for thirteen years. As a family, the Atkins like to go to the movies, and eat at new restaurants. Her #SuperSib sister, Allyson, supports Macey through everything. Allyson will be a sixth grader in the fall. 

CCA has helped the Atkins family know the value of kindness. Stacy says. “As a parent it’s hard to see individuals treat her differently because of the way she looks. Macey brings an infectious, loving spirit to everyone she meets. She has taught me that no matter what you look like, no matter what your disability is, there should never be a limit put on what you can achieve.” 

Tuesday, July 9, 2019

#ThankfulThursday: Research Update from Seattle Children's





Editor's Note: Thank you to everyone who contributed to make this research study possible. Your lives, experiences, and opinions matter to the future of quality care for all people in the craniofacial community. This one and others have positive outcomes because of your contributions. Please help additional, ongoing research study opportunities by looking through to see if you qualify for any of these listed in this blog post.

Healthcare and Psychosocial Experiences of Individuals with Craniofacial Microsomia and Microtia


Daniela Luquetti (MD, PhD) at Seattle Children's Hospital, Craniofacial Center; University of Washington School of Medicine, Department of Pediatrics, Seattle, WA, USA.
Nicola M Stock (PhD) at Centre for Appearance Research, University of the West of England, Bristol, UK.
Carrie L Heike (MD, MS) at Seattle Children's Hospital, Craniofacial Center; University of Washington School of Medicine, Department of Pediatrics, Seattle, WA, USA.
Alexis L Johns (PhD) at Division of Plastic and Maxillofacial Surgery; Children's Hospital Los Angeles, Los Angeles, CA, USA.


Background

Craniofacial microsomia (CFM) affects approximately 1,100 babies in the U.S. each year. CFM is also known as Goldenhar syndrome, hemifacial microsomia or oculo-auriculo-vertebral spectrum. It is primarily characterized by underdevelopment of the ear and jaw and may be associated with additional congenital anomalies.  Medical and surgical treatments can be quite complex, involving multiple medical specialists and long-term follow-up. However, little is known about patients’ and caregivers’ experiences of healthcare.  
The objective of this study was to explore the diagnostic, treatment-related and early psychosocial experiences of families with CFM with the aim of improving future healthcare delivery.

Method

An online anonymous survey was used to collect data from nine adult patients and 42 caregivers of children affected by CFM.  Responses from the study participants were grouped into key themes by two psychologists.

Research Findings

The key themes related to diagnostic, treatment-related, and psychosocial experiences include:
  • Challenges with medical providers included poor treatment guidance, conflicting medical recommendations, and poor coordination among providers. Participants also believed medical providers lacked knowledge of CFM and often did not show empathy. 
Participants identified specific treatments which they had found helpful and expressed an appreciation for medical providers who communicated clearly when outlining treatment plans. Participants also wanted medical providers to better inform and involve patients in their own care, and respect their preferences, needs and values. They also want providers to have positive attitudes, and to provide reassurance, invest time, coordinate care, and allow for parental control. 
Suggestions for improving care included:  better communication and coordination in relation to treatment(s), making appropriate referrals, being better informed about CFM, and supporting patient advocacy.
  • Confusion about the causes of CFM was provoked by inaccurate or incomplete information about CFM. Some participants attributed CFM to random occurrence. Others suspected a genetic component, with some noting a pattern in the family.  
  • Stressors in the medical setting included difficulties accessing care, the burden of ongoing treatment, and a lack of insurance coverage. Participants suggested that health providers could assist with insurance coverage, be more geographically accessible, and connect patients to others with similar diagnoses.
  • Hearing difficulties were reported to have an impact across settings, and participants identified related concerns for language development. When asked specifically about hearing aid use, about 20% of caregivers reported that children were motivated by the benefit of improved hearing. When asked about ways to help promote hearing aid adherence, caregivers suggested introducing aids at a young age, adjusting for comfort, praising use of aids, practicing coping skills for questions about the aid, and using a reward system.
  • Teasing was reported to be a concern by just under half of participants. Self-awareness of facial differences began around age 3, and teasing at around age 6. Teasing often involved name-calling. Some children responded to the teasing by ignoring it, while others were upset or did not know how to respond. 
  • Sources of support included websites, family members and medical providers. Participants also noted that speaking with friends and communicating with others who have similar diagnoses could be helpful. Interestingly, one third of participants identified scientific research and articles as important for coping. 
  • Adults with CFM offered advice for children with similar diagnoses, including making informed medical decisions, having self-confidence, reframing their experience when they are teased, and openly communicating about their diagnosis. 
  • Caregivers had advice for new parents.  The most common one was reassurance that their child is a typical child. They described positive reframing, seeking CFM information and expert care, acceptance, and having patience to be helpful strategies. Additional advice was to seek online support, understand that it was normal to experience a range of emotions, and to be open about the diagnosis. They also advised caregivers to teach their children coping skills and confidence. 
  • Participants ranked “understanding diagnosis and treatment” as a top priority for future research.

Conclusions

This study showed that patients and caregivers value clear, empathic, and patient-focused communication and coordination of care.
The findings reinforce the importance of ongoing psychological assessment to plan interventions for those in need.  
Treatment of CFM could be improved by establishing diagnostic criteria and standardized treatment guidelines, as well as ongoing research and education about the causes of CFM. Treatment could also be improved by making providers aware of the value of a team treatment approach to CFM, and the location of resources in their area for ongoing treatment.

Dissemination

The findings of this study were shared with health providers at the annual conference of the American Cleft Palate-Craniofacial Association (US) and the Appearance Matters conference (UK) in 2018. Two articles have also been published in leading academic journals in the field (see below). 

Acknowledgments

Thank you to Ear Community, FACES: The National Craniofacial Association, Children’s Craniofacial Association and the Atresia-Microtia group for posting the survey and for their help with dissemination.  Most of all, thank you to everyone who took part in the study for sharing their experiences.

Contact

For more information please contact Daniela at luquetti@uw.edu

References

Luquetti DV, Brajcich MR, Stock NM, Heike, CL, Johns AL. Healthcare and Psychosocial Experiences of Individuals with Craniofacial Microsomia: Patient and Caregivers Perspectives. International Journal of Pediatric Otorhinolaryngology 2018; 107:164-175. https://www.ncbi.nlm.nih.gov/pubmed/29501301
Johns AL, Luquetti DV, Brajcich MR, Aspinall C, Heike CL, Stock NM. In their own words: Stakeholder’s perspectives on stressors, resources, and recommendations in craniofacial microsomia care. The Journal of Craniofacial Surgery. 2018; 29(8): 2198-2205.  https://www.ncbi.nlm.nih.gov/pubmed/30334912

Additional resources


#WonderWednesday: Mom and PJ Visit Manhattan Beach California Elementary School to Raise Awareness








PJ and his Mom Crystal visited Grand View Elementary School in Manhattan Beach California on May 30th about facial differences, anti-bullying, and empathy-building.

The students and staff at Grandview were so moved that they made a donation to CCA in PJs honor. There were a number of students in attendance for the presentation which featured Crystal speaking about PJ trials and triumphs living with Treacher Collins syndrome, just like Auggie in the book "Wonder."

CCA has children and parents from all over the country speak at local schools, scouting gatherings, and churches to spread the word about kindness.We share our stories and experiences in the hope that we influence children and teens in the audience to choose and be kind in their daily interactions with all people.

We are all beautifully different in our own way. Thank you, PJ and Crystal for helping us share this message through telling your story around the country.