Upon completing my pediatric dental residency at the University of Washington, I was eager to apply all I had learned to help deliver the most kind and comprehensive treatment possible. Soon after that, I started seeing children with special needs as a specialist, and I felt confident that I had learned from among the best Professors and Attendings in the country. Though I knew I could never learn every contingency, I was confident in my skills and abilities to care for these sweet children.
As I started the pediatric phase of my dental career, especially when I started my private practice, I got to know the families more intimately. The actual down-to-earth stories of what they experienced daily compelled me to apply my knowledge and help these families in need. Their trials and sacrifices humbled me as a person, and I became very close to many of these patients and their kin over the years.
Every parent wants their child to be “normal.” After one exam, I remember telling the mother that her child was cavity-free. She broke down in tears and apologized, saying: “It’s just that we seldom get a completely positive exam result, and it’s wonderful to hear such.” This moment showed me how significant even small gains could be.
As specialists working with patients with craniofacial diagnoses, we get many questions from the general public about what we do.
Thinking about this made me want to ask some patients: “What are some things you want society to know or understand about you and your medical diagnosis?” I also wanted to explore the experience of their primary caregivers. To do this, I interviewed my niece, Mary Bittner, and her mother, (my sister-in-law) Susan Bittner. They were kind enough to give me some excellent patient and parent insights that I share with you now.
Mary’s Journey
Mary Bittner is a beautiful 18-year-old senior about to graduate from high school in Athens, Georgia. She was born with a bilateral cleft lip and palate. She was immediately referred to the Craniofacial Team of Scottish Rite Children’s Hospital in Atlanta- now called Children’s Healthcare of Atlanta. She also had a Ventral Septal Defect (hole in the heart) that later closed, and she started suffering from a seizure disorder around age 12. Thankfully her seizures are now well controlled, and she is excited as she embarks on a new life after graduation from high school. An avid gymnast and dancer, she has spent her life perfecting the motion of beauty in the air or on the ground. She lettered in dance at her high school, and we are excited to see how she uses the aesthetic of dance in her future. She has come a long way in these past 18 years as an advocate for children that suffer from craniofacial diagnoses.
Mary’s Perspective
Mary, you’ve been through many surgeries in your life. What is the first surgery that you remember? The first surgery I remember was the bone graft when I was 7. I remember that well because my mom stayed with me in the hospital, and she was there for most of it. It is one I can remember. I know I have faint memories of other surgeries where many people were actively praying for me, and my family told me about it every day.
Was there anyone you remember that helped you cope with it better? My mom and my favorite surgeon Dr. Burnstein (now retired). Dr. Burnstein did almost every one of my surgeries.
What do you think is the essential thing you want everyone to know about your journey to help them understand more about cleft lip and palate. Don’t be afraid of it- ask! Don’t stop and stare. It’s nicer when someone comes up to me and asks about it instead of staring at me. In reality, it’s not rude to ask, but it is disrespectful to stare.
Looking back at that seven-year-old who is going through a scary surgery, what would you tell a fellow patient to make them feel a little better about it? Just relax; it’s not as bad as you think it is. You heal pretty quickly and take it slow. I wanted to get up fast and do stuff, which just made me sick. Take it one day at a time.
You are 18, and you have grown into a beautiful young lady. What do you see yourself doing to help advocate for craniofacial patients in the future? If I could, I would like other people to know what we go through so that it’s not a weird thing for the public to understand. We have different perspectives, and I want others to understand what we go through. I also feel that my participation in dance and gymnastics has 100% helped me mentally and physically get my body better through all of this. It has helped me heal in so many different ways.
Susan’s Journey and Perspective
Mary’s mother, Susan Bittner, lovingly kept a journal of this healing journey over the past 18 years of Mary’s life. Susan shared it with me to understand the reality that they went through as a family. There were some powerful quotes that I share below about the different situations they faced. It helps one understand more about what these families go through over eighteen years.
On being seen at a children’s hospital:
“I was amazed to see that they had tiny little hospital gowns for babies. When you are a hospital that deals with children, you have even the tiniest of everything.”
“You can put things into perspective as you walk down the halls past rooms of sick children. Some of them see Children’s as their second home. It truly is a gift for the nurses to always seem cheerful and loving to each child as they (the children) battle the individual illnesses.”
Thoughts on having a child going through many surgeries:
“As much as you try to prepare yourself, you never fully can.”
“My baby has already gone through more pain at four months (of age) than some could imagine.”
“We’ve had some conversations with Mary about her having another surgery. At first, she was a little upset as she didn’t want to have another one, but she has become more accepting now.”
“She did not want to put her gown on as she knew what that meant.”
And the rest:
“Mary wanted another ‘balloon’ that day, so she left the office with another five-fingered surgical balloon, much to her delight. I will never think of latex gloves the same way again.”
“A wise mother of a daughter born with a cleft shared a beautiful quote with me when Mary was born. She said mothers like us are so lucky as we get to experience many ‘first smiles’ with our child after each surgery.”
As said before, at every Children’s hospital I have worked at, when families are at their worst place, we will be at our best to meet them where they are.
The great thing about working at a Children’s hospital is that everyone is on the same page when it comes to our care and the focus is on the family unit. Another aspect that cannot be forgotten is that most of our patients get better. Although our team focuses mainly on craniofacial, it is wonderfully widely known that advances in care over the past 25 or even 50 years continue to improve outcomes across a wide range of pediatric conditions that before were life taking. And yet, by the nature of all Childrens’ hospitals’ mission to care for the sickest kids in their regions, loss occurs and is experienced, and we share these with the families we work with regularly. Children’s hospitals are fantastic that way- everyone works with the core value of care and support for the community we are located in. It is definitely who we are.
Dr. Kyoko L. Yoda’s Peds Dental Blog 
4 responses to “A look into cleft lip and palate from a patient’s point of view…”
Thank you for giving a voice from the family/patient perspective so beautifully.
Thank you, Susan and Mary, for sharing your truths to me. I appreciate your trusting me with your inmost and honest thoughts documented at times of struggle, sadness, happiness, concern, and hope. I see you in a different light and appreciate what you both have been through. It has helped me become a more aware provider and better teacher to communicate what our future clinicians should be asking and discerning with our families. It’s like you guys have been on a journey to the edge of the world and back- and it was all so worth it and what a beautiful result for everyone involved. Respect 🙏
This is such an eye-opening account of a cleft lip and palate patient and her dedicated and loving mother captured by this blogger named Dr. Yoda in sensitive, gentle and caring manners.
Dr. Koji- such kind words from a loving father. Thank you. I agree with you that Mary, the patient, has shown strength and perseverance going through everything she has all these year- with the utmost grace. Her mother, Susan Bittner, wrote that beautiful and heart grabbing memoir consistently each time her child was goi g back into hospital. It opened my eyes to what a mother/father/primary caregiver goes through and feels during these times that we, as clinicians, could start to take for granted if we are not aware and on our guard against such. I really appreciated Susan trusting me with such a personal documentation so that others could hear truth. It also gives me a humble, more insightful, and feelings of pure respect for my sister-in-law who always presents as gracious and kind, but also strong like the “Steel Magnolia” she is.