Smile With Simon Translated Into Tagalog for Phillippino Children

Patricia Simon's book about a young cardinal named Simon was translated into the Tagalog language to help kids with their speech in the Philippines. The speech camp was offered with the help of Smile Train international to kids born with cleft lip and palate. In these pictures you can see children singing the Smile with Simon song in Tagalog and reading the book with speech camp staff. 

Congratulations to Patricia Simon on reaching more children with her message of acceptance and kindness through her creative cast of characters including Simon, Patty, and Buddy the bluebird. 

Patricia Simon Delivers Keynote at Inaugural Cleft Lip and Palate Day in New York

Excited Reader!

Author, registered nurse, and cleft lip and palate advocate, Patricia Simon, is spreading her message of acceptance and hope across the world. Earlier this year her children’s book was translated into Tagalog for kids in the Philippines taking part in a speech camp organized by Smile Train. And just recently, at the beginning of September, Patricia delivered the keynote speech at New York’s Morgan Stanley Hospital Cleft Lip and Palate Team Day.

The road to the keynote address in New York all began with an email. Two parents were interested in her books, Smile with Simon and Simon and the Buddy Branch about a cardinal named Simon that has a cleft beak, who seeks out acceptance and kind friends in both books. The family requested the books, sharing that they were unable to afford to pay for them. Simon sent the books to the parents for free, and enclosed an additional set for their surgeon’s office waiting room at Morgan Stanley Hospital. Plastic and reconstructive surgeon, Dr. Thomas Imahiyerobo picked up the books, read them, and wrote to Simon saying, “As someone who has dedicated a large part of my career to taking care of children with clefts, these books really spoke to me. The positivity that they exude and kind stories that they tell are exactly the outlook that I wish for my patients and families to have.” Dr. Imahiyerobo went on to ask Patricia to speak at the Cleft Lip and Palate Team Day.

Morgan Stanley Hospital hosted its inaugural Cleft Lip and Palate Team day this year. It was so successful that they plan to make it an annual event in years to come. The goal for this year was to focus on advocacy, outreach, but most importantly building community among patients with facial differences. To that end, the hospital chose a beach theme with brightly colored tables, a DJ, and leis and Cleftstrong bracelets for everyone. Craniofacial patients and their families were all invited to mix and mingle with Morgan Stanley Hospital medical professionals including, Dr. Imahiyerobo, Dr. June Wu, Dr. Jeffrey A. Ascherman, and Natalie Tavarez, Craniofacial Coordinator. Miss New York Teen USA, Saige Guerin, was also present for the event.

Patricia Simon with Dr. Imahiyerobo

Pat spoke from the heart sharing her keys to success and happiness. She told the audience of 125 people to, “Open yourself up to others and experiences. We are all different and we are all beautiful. Be kind to one another and accept people for who they are. Yes, there will be struggles and ups and downs. Continue to move forward. Put your cell phones down, look up and experience life. Realize you are not alone. There are organizations such as CCA and the American Cleft Palate-Craniofacial Association that can provide resources and assistance for those affected with craniofacial differences.” She let people know about the books she wrote that help carry this message to children with a bright, fun cast of characters, including a cardinal named Simon, girl named Patty, and Buddy the bluebird.

The crowd responded positively to her words with tears, knowing

nods, and smiles. Pat said, “After I gave my keynote speech a husband and wife came up to me crying as they were holding their one-year-old daughter. They told me they were deeply touched by my speech and thanked me for being so positive and transparent in sharing my journey. I was deeply touched and happy that others got so much from my speech.”

Signing Books

Later she signed copies of books that were distributed to each family at the event and listened to patient testimonials shared during the day spent together. In speaking with patients and families, Patricia talked about everything from upcoming surgeries to the gratitude they each felt in being part of the Morgan Stanley Hospital community.

Way to go Patricia on spreading words of kindness, hope, and acceptance to these New York families. CCA looks forward to your future writing and speaking adventures as you advocate for all of us in the craniofacial community.

From the Bench with Francis: The Potential of Face Transplant for Craniofacial Reconstruction

From the Bench with Francis

A regular column on craniofacial news and technology by Dr. Francis Smith

Over the years, since the first partial face transplant in France in 2005 and the first full face surgery in Spain in 2010, surgeons in Europe and the USA have pioneered the transplantation of entire faces from cadaver donors to patients whose faces were destroyed by trauma, burns, and disease The current National Geographic magazine (September 2018) cover story features the case of a young lady, Katie Stubblefield, who lost her face to gunshot trauma and had a cadaveric face transplant. So far, all the cases of face transplant I am aware of were done on patients for burns, facial trauma, and disease, but this procedure holds potential benefit for patients with congenital craniofacial anomalies.

The surgery involves removing the face from a donor cadaver, often with its underlying tissues (muscles, bones, blood vessels, fat, and nerves), and attaching it to the patient after his own disfigured face is removed. A large team of specialist surgeons not only sew the donated face onto the recipient, but must meticulously attach every blood vessel, nerve, bone, and other components to their exact counterparts in the recipient’s head (often using surgical microscopes and microsurgical techniques). The procedure, being so complicated, can take over a day’s time to complete (8 to 36 hours), and results in a 10-14 day hospital stay postoperatively. Since this is a transplant, like any organ transplant, the patient is subject to lifelong immunosuppressive therapy which opens him or her up to potentially fatal opportunistic infections, kidney damage, and cancer. There are ethical considerations surrounding the surgery itself and the aftereffects on quality of life.

Could this one day help children and adults with congenital craniofacial conditions, such as Treacher Collins syndrome? The medical challenges, including lifelong anti-rejection immunosuppression therapy, would be the same as for others undergoing face transplantation; this might be even more challenging in children with craniofacial anomalies as they already deal with medical complications stemming from their congenital conditions. Perhaps the biggest challenge may be the ethics of having another person’s face (in the case of a child, a deceased child’s donated face) replacing their own, sense of identity, and other concerns not yet imagined. It might be meant to replace current craniofacial reconstructive surgical techniques that mostly rely on grafting the patient’s own tissues into his face. If this ever becomes an option for reconstruction in congenital craniofacial anomalies, there may be ethical considerations we cannot yet begin to imagine. It will be an interesting debate, and I hope to encourage such debate.

October's The Mighty Prompts....and Download Their New App

1. Sometimes the least likely people show up when we need them most. Describe a moment when someone you didn’t expect to be there helped you or a loved one in some way. Why was this meaningful to you? What can others learn from this moment? If you respond to this writing prompt, use the hashtag #HelpEachOther at the end of your post.

2. Create a list of questions you wish you’d asked your doctor the day you received significant medical news (i.e. a diagnosis, a surgery recommendation, a prognosis, etc.). Sometimes in the moment when your doctor asks you if you have any questions, even though you have a ton, you can’t think of one. Then you go home and they all come back to you. Create a list you wish you’d had that may help others going through what you went through. What should you have asked, or, what should your doctor have been sure to go over with you? If you respond to this writing prompt, use the hashtag #QuestionsForDoctors at the end of your post.

3. Let’s talk bullying. Unfortunately, many people with health conditions and their loved ones are bullied at one point in their life for being different. If it’s not too painful to recall, write about a moment you faced a bully and how you dealt with that — or how you’re working through it now? How do you wish you had handled the situation, or, if you’re proud of how you reacted, what would you tell others facing similar problems? If you respond to this writing prompt, use the hashtag #EndBullying at the end of your post.

4. October can be a challenging month when it comes to food. With Halloween, and the holidays around the corner, many people with food challenges — from allergies to sensory issues to disordered eating to dietary restrictions — find this time of year difficult. If you are one of them, describe a moment when your or a loved one’s health condition made a food experience challenging. What do you wish others understood about you in this moment? How did you handle it and what advice would you give for people like you?

October's Poetry Prompt

“These are #MySymptoms…”s

Living with the symptoms associated with both physical and mental illness can be challenging — people who’ve never dealt with certain health conditions often don’t understand how the visible and “invisible” symptoms someone experiences affect their day-to-day life, and therefore it’s easy to feel isolated, frustrated or misunderstood.

That is why for October’s poetry prompt, we’re asking you to write poetry about the symptoms you experience or have experienced in the past due to a health condition using the hashtag #MySymptoms. By writing poems about these everyday experiences with symptoms, we hope you can bring light to what you’re going through, and maybe even help process through them.

If your condition isn’t associated with any symptoms, we still want to read your poetry! Post your poem to the #MightyPoets page, or participate in last month’s prompt: “I am #beyondworthy because…”

Here’s how to post your poetry or read work from #MightyPoets.

Parenting A Child With A Facial Difference, One Cleft Mom's Perspective

Guidebook Underway for Parents of Kids Born with Cleft Lip and Palate by Amy F. Mendillo...

Help Needed! Please email Amy at amymendillo@gmail.com if you would like to share your story. Learn more about how at the bottom of the page.

By Amy Mendillo
From the moment I learned that my daughter would be born with cleft lip and palate, I started to worry about how strangers would respond to her face. Then, a few weeks after her birth, it happened. I took her to the pharmacy one day to run an errand. And as I fumbled around looking for things to buy, an older woman came by, paused at the sight of a baby, and bent over to take a look. She’s staring at my daughter’s clefts, I thought. I had rehearsed a few words for this kind of situation; I had planned to explain that my daughter was born with CLP and would have surgery soon to close the space in her lip. But would I mention that I find her beautiful as she is? Suppose this person says something hurtful? I couldn’t think of any words. The woman leaned in real close. I am so tired, I thought. I hope I don’t cry.

The woman stood up. She smiled. “Why, look,” she said, “at how soundly she sleeps.”

I decided to write a book for parents of kids born with CLP to help them address the practical and emotional challenges of a baby’s first year. After hearing from other parents about their trips to the pharmacy (or the hospital or their family reunion), I wanted, even more, to share their stories and ideas, too. I hope it will feel comforting to hear how others cope with the early parts of this journey, whether we’re feeling worried, overwhelmed, joyous, or in this case, relieved and appreciative for the basic kindness of others. Many parents mention concerns about bonding, or describe a shaky lump in their throats when they hand over their child, literally, to medical people prior to surgery. Some parents feel discomfort related to taking and sharing pictures of their baby. Others wonder why this condition happened to their child in the first place; many mention guilt.

Parents and Clefts (that’s the working title of the book) also addresses practical topics related to navigating a baby’s first year, ranging from bottles to burping to recovering from surgery, based on scores of interviews with professionals and other parents. So whether you’re awake in the middle of the night wondering whether you should enlarge the nipple on your Mead-Johnson bottle (go for it! Yes, cut it with a knife!), thinking through your search for a surgeon and team, or just looking for a clear, personable description of the basics on the condition, this resource will have you covered. When my husband and I were going through this experience with our daughter, we wanted a guidebook on the bedside table (while our baby was screaming, crying, and spitting up milk) rather than yet another desperate search on the Internet (though I love online parents’ groups, too). Parents and Clefts is a practical and emotional resource—written from one parent to another—based on current research, academic articles, firsthand experience, and the collective wisdom of many, parents and professionals. I can’t wait to share it with you.

But first, I need to finish it. If you are a parent of a child born with CLP, I would love to speak with you about your early experiences with your child. I am conducting phone interviews this fall and possibly into Spring 2019, particularly on experiences with pre-surgical devices (like the NAM and other methods) and with cleft palate bottles. But I’d also welcome your stories and insights more generally. Your contribution would be enormously helpful. All interviews are anonymous; you can read more about it at parentsandclefts.com. 

If you’re interested in participating, please drop me a line at amymendillo@gmail.com. I would be most grateful for your help. My hope for this book is that parents will feel more informed about their choices, more comfortable with the journey, and reassured that they are not alone.