The following are stories written by mothers, fathers, and grandparents about their children and their experience with various craniofacial conditions. As you can see by their smiles, everyone has made great strides and are shining examples of the miracles of crainiofacial surgery!
Letter from Mom & Dad -
Paisley was born in April 2014 to the parents of Rick and Lynna Bedsole.
Paisley was born with a unilateral cleft lip. We were aware of her cleft lip from an ultrasound while pregnant. Prior to her birth we met with Dr. Sargent coordinator Rita Boydston to discuss everything from a cleft lip to a cleft palate. Rita was extremely helpful especially her words of encouragment around our fears.
After Paisley was born, Dr. Sargent and his team decided to place a latham device for her nose which was deviated on one side. This was the first time that Dr. Cox had ever placed a latham device for a baby with a closed palate. The results were great! In October, Paisley had her lip repair. We could not be more pleased with our experience and Paisley's outcome. People that see her never know that she was born with a cleft lip. Paisley is such a happy chld and smiles all the time. She has touched so mnay lives with just her smile.
Lynna & Rick
Priya's 2000 - 2015
Priya shares her thoughts about being born with a cleft lip/palate
"I was born with a cleft lip and palate. I have been through four surgery's by Dr. Sargent. I still have a couple more to go through in the future. Dr. Sargent is the most amazing, outstanding surgeon, I know. We couldn't be any happier with the results so far. I pray he does great on my next couple of surgeries. Craniofacial is not an easy thing to deal with but it is all worth it. I thank God everyday for the beautiful craniofacial life he has given me and amazing families and friends who support me everyday"
Letter from Dad -
Our daughter, Julia Diane, was born December 13, 2004 with Treacher Collins Syndrome, a rare disorder which is thought to be caused by a change in the gene on chromosome 5. We were unaware of her diagnosis until her birth, as an ultrasound did not reveal any problems. Needless to say, we were scared to death, and no one could answer our questions. Julia was put in an incubator, transported to another hospital, and placed in the NICU. While in the NICU, she had a feeding tube placed which she kept until she was 2 years old.
A Genetecist confirmed her diagnosis, but we were still in the dark as to where to go next. Finally, while searching on the internet, we found Dr. Larry Sargent and the details of his remarkable skill in craniofacial surgery. We are extremely grateful to Dr. Sargent, Terri Farmer, and the Craniofacial Foundation. Julia is now 5, and it seems a lifetime ago when we drove to Chattanooga for her first evaluation. We have seen and experienced what a positive impact this Foundation has had on families and their children. From Camp Adahi to paying for our gas to get to appointments (we live 4 hours away), they have surpassed our expectations.
Julia is a normal little girl who loves ballet, church, and tormenting her brothers. The night she was born we knew God had a plan for her, but could not fully understand how His great love would manifest in such a tiny girl. Thank all of you for your love, encouragement, and support.
Doug, Julia's Dad
A letter from Alex's mom...
Alex was born in Kharkov, Ukraine, on December 22, 1998. He was born with a bilateral cleft lip and palate. While in Kharkov, Alex received surgery to close his cleft lip. In May of 2001, we traveled to Kharkov to adopt Alex and his brother, Andrew. Alex was 2 1/2 years old when we adopted him, and what a blessing he has been to our family. The first time we saw Alex, we knew he was going to be our son. He was so full of life and energy! We knew of the great reputation of the Tennessee Craniofacial Center in Chattanooga and that a cleft lip and palate could be repaired through surgery. Alex has had six surgeries with Dr. Sargent.
Alex's life has been changed forever by the incredible skills and generosity of the Tennessee Craniofacial Center and the Craniofacial Foundation of America. Dr. Sargent's ability as a surgeon has improved the quality of life for Alex and will never cease to amaze us. The Craniofacial Team consists of gifted professionals that have met all of Alex's needs including speech therapy, audiological, orthodontic, and surgical repair. Over the past eight years, we have developed a wonderful relationship with everyone involved in Alex's care.
It has been an incredible journey watching Alex grow and develop into the wonderful boy that he is. He is full of love, creativity, and confidence. His life would not be what it is today without the expertise, care, and love he received.
Letter from Mom & Dad -
When we were asked to write about our experience with the Craniofacial Foundation, it was such an honor. We did not anticipate how difficult it would be to put our thoughts and feelings into words. As much as the Foundation has done for us, through there their tireless support, council, and magical touch; it is our privilege to share our story.
It is only fitting to start in the beginning. Our daughter, Madeline, was born on September 18th, 2007. To our surprise, she was born with a cleft lip and palate. To be honest, we were crushed with concern and scared. Our first question was, "Is she in pain?" We knew next to nothing about her condition, so we felt compeltely helpless. The staff at the hospital where Madeline was born was wonderful except they could not give us answers and reassurance fast enough, but they knew who to call. Just hours after she was born, Terri Farmer from the Foundation came to visit us. Like a guardian angel, she swept down and put us at ease. Through her knowledge, organization, and tenderness, Terri calmly told us of things to come and taught us how to care for our baby. Before we left the hospital, Terri and the Foundation had an agenda filled with doctor appointments, and we knew we were dealing with people who care about children.
The wonderful thing is that after all of the surgeries, the relationship between the Craniofacial Foundation and our family did not stop there. They offer so much continuted support. There is an annual clinic where Maddie goes to see all of her doctors in one day. Each year a magical retreat at Camp Adahi is set up where families with children who have been touched by the Craniofacial Foundation can come to meet and share in their wonderful blessing. A judgmental world can be tough on a child under normal circumstances, let alone children of the Foundation. The camp gives the children a venue to do what they do best, and that is laugh and play.
We thank the Foundation from the bottom of our hearts to all the doctors, nurses, coordinators, and other medical
staff, that helped give our daughter the beautiful smile she deserves!
With love to all,
Beth, Maddie, and Scott
A letter from Daryl's family...
The Craniofacial Foundation of America has played a crucial role in our lives. Daryl, who has Apert Syndrome, was only 6 months old when we first me Dr. Larry Sargent. We as parents were in a frantic search for the right surgeons for the multiple issues Daryl was facing. After visiting several hospitals and surgeons, we found the CFA and Dr. Sargent.
Dr. Sargent is a true dedicated artist who made us realize we had found the perfect surgeon for our son. The Craniofacial Foundation helped us as a family to understand the process and much more. The CFA was a wealth of information at such a time when there was very little known about Apert Syndrome. The CFA helped us connect with other families going through similar issues. We have made life long friendships with many of the other families through the Foundation.
Daryl has had over 28 procedures to date, and the Foundation has been with us every step of the way. There have been more times than I can count that I have called the Foundation because I had no one else to go to, and they were always there for me and my family, even providing meals while we were at the hospital. We are so proud of the young man Daryl has become. When we think back to the uncertainty we felt when he was born, and the profound happiness we have today, we are so grateful. Daryl has more surgeries in the future, but it does not impact us as it once did, because we have the proven support from the CFA. We thank God, our family, and the CFA for giving us the tools to help Daryl be the happy, well adjusted young man he has become.
A letter from Zoe's mom and dad...
Zoe is our second child. She was born with a cleft lip and a severe bi-lateral cleft palate. When I was 20 weeks pregnant, we went to the doctor to find out if we were having a boy or a girl. No only did we find out that we were having a girl, but we also found out that she had a cleft lip and palate. It was devestating. It was the scariest day of my life. I had never seen a child with a cleft lip before, and I didn't know where to start. I needed to educate myself and find the best care for my baby.
It was only a matter of days before we were given Dr. Larry Sargent's name. All I made was one phone call to Terri Farmer at the Tennessee Craniofacial Center, and I never had to hunt for any doctors or answers since that call. The Craniofacial Foundation of America helped me every step of the way. Through the Foundation I met other parents who had already been through this nightmare. Zoe and I were able to be around other children with the same problems. I was able to share my thoughts and feelings with other mothers that I new understood this situation.
Zoe has had 14 surgeries to date and has numerous other health problems. Anyone who met Zoe would never guess what she has been through. She is an amazing child, so smart and happy! All of her nurses and doctors couldn't ask for a better patient. She is beautiful, happy, brave, and she will steal your heart away in two seconds. I questioned why I had a baby with all of these problems, but now I know that Zoe is a special gift. We are so blessed to be her parents.
Christy & Jason
Letter from Mom -
Luke was born with Apert Syndrome, a rare genetic disorder that occurs in 1 in 160,000 births. The bones in his skull, hands and feet all fused too early. At two, he had already had 12 operations and we anticipate that he will have many more throughout his life. When the doctors explained the complexity of Luke’s condition, I was hurt, confused and sad. I had done everything right during his pregnancy but still blamed myself for what had happened. I did not want to talk or see anyone. When Luke was born, the staff from the Craniofacial Center and the CFA came to talk with us about Luke’s condition. They introduced us to another family whose child also has Apert Syndrome. These people have become angels to our family and have been with us every step of the way. I thank God that he has allowed me to go through the bad times to get to this wonderful place in my life. We feel blessed that Luke has been entrusted to us. We are surrounded by family and friends and we cherish our CFA family more than they will every know. Like other two year olds, Luke is a “handful.” We love watching him reach his milestones and, to us, he is the most beautiful little boy in the world! This holiday season, please join us in helping the CFA give every child that needs it the opportunity to receive the services they need! Every gift to the CFA will help this organization continue their work in helping families like ours through difficult times.
Heather, Luke's Mom
Letter from Dad -
Kathryn was born with craniosynostisis. She was officially diagnosed with Crouzon Syndrome when she was three years old. The Henke family began researching this disorder at the Wichita, Kansas Public Library. Through this research they discovered the Tennessee Craniofacial Center. The Henke family decided to visit the Center, and at that appointment they discovered an amazing team of professionals who were going to be able to bring new life and hope for their daughter.
In the summer of 1978, Kathryn had a total vault surgery performed by Dr. Sargent. The surgery involved cutting her skull into 9 pieces and reshaping her skull. This was an amazing surgery that changed her life forever. Three months later, Kathryn started her first day of preschool on tract with her friends. To date, Kathryn has had 12 surgeries and is scheduled to have a LeFort 1 surgery as soon as her wisdom teeth are removed. She is very strong willed and bounces back with an amazing attitude.
Kathryn is now 15 years old and a sophomore in high school. She currently serves as the president of her class and maintains a 4.0 GPA. She participates in volleyball and softball. Outside of school she is the vice-president of her 4-H Club, participates in youth group activities, rides four wheelers, hangs out with her friends and enjoys helping out on the family farm.
A letter from Perry’s Dad…
Our son, Perry, was born with a cleft lip. We did not know about this diagnosis until the day of his birth. My wife, Jennifer, and I felt many emotions that day. We were relieved and joyful that our son had finally arrived, but we also felt shock, fear and sadness when we saw his cleft lip. One of our most heartbreaking moments occurred when the hospital photographer came to take his picture. I saw the tears in my wife’s eyes and my heart sank knowing that our baby would be different from the other babies on the hospital’s website.
Terri Farmer and the CFA family were with us from the very beginning. They helped us realize that his problem was very correctable and that, in fact, we were actually lucky. They introduced us to another family whose baby had recently gone through cleft surgery. Seeing the child fully healed from surgery gave us much joy and anticipation. The support the CFA gives to families emotionally and financially to ensure that each child receives the gift of normalcy is without a doubt the most precious gift of all. It is priceless. Our family’s desire is that no child with a facial difference be deprived of the opportunity our son had. The team at the Tennessee Craniofacial Center is both talented and dedicated. No child should have to settle for anything less than the best care possible, even if it means traveling to Chattanooga from across the country or from another country.
It was not until the day of Perry’s surgery, that we essentially saw our child’s face for the first time. Thanks to Dr. Larry Sargent and the Craniofacial Team, that day was one of the happiest days of my life. Perry has a near perfect smile. His friends will never look at him and wonder why he looks different. What more could we as parents ask for? Please join us in making a gift to the CFA this holiday season.
Letter from Mom -
My son, Jackson, was born with a unilateral cleft lip and palate in September of 2001. During my pregnancy, I had no idea that he would be born with a craniofacial abnormality. Since there was no family history, it had never crossed my mind. Minutes after his birth the realization starting setting in that we were going to be dealing with an up-hill battle over the next several years. Questions immediately flooded my mind - How was I going to feed him? Would he learn to speak properly? And worst of all, how would he be treated from others as a child with a craniofacial abnormality? Within hours of Jackson's birth, Terri Farmer had come to the hospital to meet Jackson and I and to speak with me about the Craniofacial Foundation. Her visit provided answers and hope for my son as she explained the steps that would be immediately taken to ensure he would receive the proper treatment in the best possible way. She arranged a feeding specialist to come to the hospital and teach me the proper way to feed my son as soon as he was able to eat through a bottle. I never had to ask for anything regarding the welfare of my son. Terri and the Craniofacial Team were there to offer support and information and answer any questions immediately.
The next day I was in the hospital nursery rocking him and bonding with my newborn, and I noticed that every time a nurse opened the nursery doors there were more and more people standing outside in the waiting area. Soon I could hear a small crowd was forming and talking amongst themselves. I assumed that someone "important in the community" had given birth that morning and numerous friends and family members had started to crowd the lobby. A nurse told me that I had some visitors, and to my wonder all the people in the lobby were there for me, my son and my family! They were all part of the Craniofacial Support Group and had heard that a special new addition had been born. These parents, and soon to be friends, filed into the nursery with photo albums full of pictures. The pictures showed the journey of their children at birth through their present age with the same craniofacial abnormality. The pictures also told the stories of their personal journey through numerous surgeries and recoveries. They were gentle and supportive and answered any questions I asked...especially mother to mother. As the families started to leave I realized how important their visit had been to me and my family. It had answered so many questions and relieved so much anxiety. I felt hope for the first time since his birth that he would live a normal and happy life.
From that point on the Craniofacial Foundation has been a part of my life. The CFA has many organized patient family events where families come together to share their journies and provide support to one another. They have been medical advocates when I needed help regarding insurance issures and have always lent a helping hand when I needed one. The Craniofacial Team of doctors, volunteers and families are such an important part of our lives now, and I could not imagine life any other way. Truly, all things happen for a reason, and we are blessed because of it.
Kathy, Jackson's Mom
Letter from Mom -
When I was five months pregnant, I shared my history of having been born with a facial deformity with my doctor. He immediately ordered an ultrasound, and the ultrasound confirmed that Matthew would be born with a cleft lip and pallet. I was so scared, I started to cry and saw the fear on my husband's face. As soon as we left the doctor's office, we went to see Terri Farmer at the Tennessee Craniofacial Center (TCC) and told her everything that had just happened. She gave us information about the TCC, Dr. Larry Sargent, and the Craniofacial Foundation of America (CFA). I knew I had done the right thing by going to see Terri. She helped to ease our minds. I also knew that when Matthew was born he would be in good hands, just as I was when I was born. You see, I was also a patient of Dr. Sargent.
It is comforting to know that we have the support of the CFA and the CFA team of doctors and specialists. Once a year we have the CFA camp where families gather. It is there that we feel the acceptance of our children. No one is staring or pointing, and our children are welcome no matter how they look. We see other children that might have the same facial differences, and it gives us the chance to talk with other parents who are going through the same trials and tribulations as we are. Last year Matthew was not talking, and one of the other mothers told me that her daughter had the same problem, and after she had her phliengal flap surgery she would not stop talking. Before the camp, the CFA team had suggested that surgery. My husband and I started to make arrangements for the surgery immediately after returning home from CFA Camp. I wish I had this camp when I was growing up. I am glad my son has the opportunity to attend the CFA Camp, and I hope it never goes away!
Letter from Katie -
On April 24, 2007, exactly one month and one day before my high school graduation, I finished band rehearsal and climbed into my car to drive the 20 miles home. On my way home that day, I collided with a piece of farm equipment that was pulling out onto the highway. The machinery attached to the rear of the tractor crashed through my windshield and hit my face. All of the bones in my face were broken and fractured in multiple places. A clot formed in my carotid artery, and both of my carotid arteries were dissected. I was airlifted to Erlanger Medical Center where I was fotunate enough to meet an amazing trauma team including Dr. Sargent. Through Dr. Sargent, my family and I were introduced to the Tennessee Craniofacial Center (TCC) and the Craniofacial Foundation of America (CFA).
Throughout my hospital stay, the TCC and the CFA supported my family and helped give me back the quality of life that I had known before my accident. Thanks to the wonderful care I received from Dr. Sargent, Erlanger, the TCC and the CFA, I was released from the hospital in time to attend my high school graduation. I presented my Salutatorian address to my class with my mouth wired shut, a feeding tube hanging from my stomach, my trachea still unhealed, my eye practically swollen shut, and my face swollen and bruised, but nevertheless, I presented it!
Since kindergarten, I have known that I wanted to become a doctor, and my accident and my interaction with Dr. Sargent, the Tennessee Craniofacial Center, and the Craniofacial Foundation of America provided me with the direction I needed for my medical pursuits. I now hope to pursue reconstructive craniofacial plastic surgery and use my past experience to offer reassurance to future patients and their families and guide them through the frightening and emotion event. Currently, I attend Vanderbilt University where I study Biology and Medicine, Health, and Society and research craniofacial birth defects.
Letter from Mom -
June 16, 2008 was the tragic date that my son, Trent Creswell, was nearly taken from us. One driver's careless choice changed our world forever.
Trent was hit head on by a speeding car while riding his bicycle on the sidewalk near our home. He sustained critical injuries to his entire body, but the most devastating impact was to his face. Thankfully, the trauma team at Erlanger Hospital worked for hours to save Trent's life. We were introduced to Dr. Mark Brzezienski who performed the initial facial surgery and then later to Dr. Larry Sargent who performed further reconstructive surgery. During this process the fears that plagued our family following Trent's accident were tempered by the the support we received from the doctors and staff of the Plastic Surgery Group and the Craniofacial Foundation. The information and constant contact we received transformed the scary world in which we were thrown into a place of caring guidanace.
Trent not only survived.....he excelled.... writing an award winning entry for the National Foundation for Advancement in the Arts about the journey of the accident. He graduated high school with his class when we wondered wheter he would even attend school that year. He was accepted into the prestigious DePaul Theatre School in Chicago where he attended a semester of college before receiving a personal invitation to study with 3 time Pulitzer Prize winning playwright Edward Albee. This tragedy ahs been transformed into a blessing that none of us could have imagined in our wildest dreams.
We feel fortunate and blessed to have been in the hands of these very special physicians and staff emembers....And we are proud to call them FRIENDS!
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