By Chanthy Na and Siyab Khan
(October 2020) As a young child, Jennifer Falomir-Lopez just wanted to look “normal” like all the other kids. She knew she was different but couldn’t explain to her friends why she looked different. Jennifer was born with a cleft lip and cleft alveolus.
“It was really hard for me growing up because kids didn’t really understand my condition and I didn’t know what I had,” said Jennifer. “I would always tell them I fell, or I hurt my face, those were just some of the things I would say, when I was asked.”
A cleft lip occurs when the tissue that makes up the lip does not join completely before birth. This results in an opening in the upper lip. The opening in the lip can be a small slit or it can be a large opening that goes through the lip into the nose. An alveolar cleft is a cleft of the upper gum line. It most often accompanies a cleft lip and/or cleft palate.
According to the Centers for Disease Control and Prevention, each year in the United States about 2,300 babies are born with a cleft palate and 4,000 babies are born with a cleft lip with or without a cleft palate.
Jennifer was referred to the Cleft Lip and Palate Clinic at Children’s Hospital Colorado by her pediatrician shortly after her birth. She had her first surgery when she was just five months old to repair her lip and nose, and a few months later she had an additional lip and nose revision.
As Jennifer started attending school, kids continually bullied her and always asked about her face, despite surgeries to correct her condition as an infant. She would tell her mom about these incidents and that she felt that she could not do much because of the way she looked.
Jennifer’s mom, Maria Lopez, reconnected with the Cleft Lip and Palate Clinic to discuss additional surgical options.
“It was really hard for me as a mother to see someone bullying my child for having a cleft lip,” said Maria. “I wanted to help my daughter.”
In 2012, Jennifer and her family connected with Brooke French, MD, associate professor at the University of Colorado School of Medicine Division of Plastic and Reconstructive Surgery and co-director of the Cleft and Craniofacial Surgery Programs at Children’s Hospital Colorado. This connection would lead to a bond between Jennifer and French that has spanned the past eight years, multiple surgeries, and numerous follow-up visits.
“I met Jennifer when she was six years old and have watched her grow into the brilliant human being that she is now at 14,” said French. “She has always had a quiet confidence and focus.”
French and the Cleft Lip and Palate Clinic team at Children’s Hospital Colorado provided Jennifer and her family with additional surgical options. This time, since Jennifer was older, she was included in those discussions. With a new plan in place and her family’s support, Jennifer continued her journey to repair her cleft lip and cleft alveolus.
Jennifer described feeling worried and scared before her first surgery with French. She remembered hiding from her mom before she went to the hospital and shaking in the hospital bed before her procedure. However, French and team were able to calm Jennifer’s nerves and her revision surgery to repair her lip was a success.
Jennifer’s courage and perseverance were tested throughout her post-surgery recovery period. She found it difficult to not be able to do everyday activities, but after a six-month recovery, she was finally able to see her transformation.
“I looked at my face after six months and thought to myself that I looked really different,” said Jennifer. “I told my mom immediately that I wanted another one (another surgery)!”
Jennifer would go on to have several more surgeries and bone grafts to repair her cleft lip and cleft alveolus, with her most recent surgery occurring in June 2019. While the physical transformation of the surgeries can be seen, the impact has been even more profound. Jennifer has flourished with each surgery and has become an advocate for those with cleft lip and/or palate.
She speaks openly and passionately about her condition to help others learn so that other children don’t have to face the same challenges and bullying she went through.
“My whole life I have lived with something that I can't control,” said Jennifer. “It’s no one’s fault that I have this condition, but I have had people judge and not accept me for who I am.”
Jennifer continues to stay in touch with French. This spring in the midst of the pandemic, she partnered with French on a research paper covering the treatment of cleft lip and palate. Through her paper for an education fair, Jennifer shared the experiences she and her family went through. Along the way, she taught her classmates about the experiences she and others have faced.
“Jennifer has strength and positivity that are inspiring,” says French. “I am grateful to know her.”
Jennifer will be the first to say she couldn’t have gone through this without the support of her family, friends, and the team at Children’s Hospital Colorado. Her family has always stood steadfastly behind her, advocating for her best interests and future.
“My family plays an important role,” said Jennifer. “It’s important that the whole family is involved with the care of a kid with a cleft lip.”
One of Jennifer’s biggest supporters was her friend Alex, whom she’s known since pre-school. During her last surgery, Alex made a surprise visit to see Jennifer in the hospital. She encouraged Jennifer with laughter and helped to take away the nerves of her surgery.
"Alex has always supported me,” said Jennifer. “There were times we couldn't always hang out because I had to go to a surgery, or I had a doctor's appointment, but she has always been there for me.”
Jennifer was also fortunate enough to have Maureen Andrews, RN, MSN, CPN, an advanced practice nurse and clinical nurse specialist for the Cleft and Craniofacial Program at Children’s Hospital Colorado by her side since she was born.
“As Jennifer has gotten older, she has had increased interest and motivation to be actively involved in her care,” said Andrews. “She has developed into a wonderful, insightful, caring person who has much to offer to those who come in contact with her.”
The future is complicated by the pandemic, but Jennifer is looking forward to her freshman year this fall at Arrupe Jesuit High School located in northwest Denver. She said she plans to continue to live life to the fullest, dancing and playing competitive volleyball for the first time for a school team.
One thing Jennifer is clear about is her future career and her passion to carry the torch that was lit by French. After high school, her goal is to go to college and medical school and become a surgeon.
“At first I wanted to be a teacher,” said Jennifer. “Then I met Dr. French. I saw the work that she did, and I really wanted to do that for other people. I want to help make kids feel better about themselves.”
The care Jennifer has for others is reflected in her courage to share her story and in her compassion for others.
“I had it really easy,” she said. “I didn’t have a disease or syndrome, just a cleft lip and that was it. I felt like I never appreciated that.”
In their own words: