Family shares story to raise awareness, hope and comfort
Shock. For Courtney Robinson, that is the one word she feels accurately describes her emotions after a routine doctor’s appointment about four years ago.
Prenatal testing at 13 weeks indicated that her baby’s mouth was not forming completely. “I was in a state of disbelief,” says Robinson. “I honestly remember not knowing how to feel. I heard the news, but it didn’t really register. It almost didn’t feel real.”
Preparing for Camden’s Arrival
Robinson was referred to UT Physicians and the Texas Cleft-Craniofacial team to help her baby. “They are a phenomenal team,” says Freddie Trotter, Robinson’s husband. “They handled us flawlessly. Dr. Greives is a phenomenal surgeon. They explained everything. When it was time for Camden to be born, we were all ready.”
For Camden, the diagnosis was clear at 20 weeks of pregnancy. He had cleft lip and palate, which most often is formed between the sixth and ninth weeks of pregnancy. For cleft lip, the tissue that makes up the lip does not join completely. For cleft palate, the roof of the mouth has a gap.
A treatment plan was created after meeting with the team. “The whole process made me feel a lot better,” explains Robinson, Camden’s mother. “We knew what to expect. They showed us pictures and explained how we would address feeding him and surgeries.”
“Prenatal care is so important,” says Matthew Greives, M.D., assistant professor in the Department of Pediatric Surgery at McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth). “Once a family is referred to us, we counsel and prepare them. We can also reassure them that their child will be happy, healthy and normal. Parents need to hear that when faced with these challenges.”
While the parents felt prepared for the day, they acknowledge that his birth was still surreal. “I ended up having a C-section,” explains Robinson. “My mom was in the delivery room. She saw Camden first. The reaction on her face when she saw him caused me to cry. It is one thing knowing about challenges, and it is another thing seeing it. It makes it more real. It is hard for any parent.”
Robinson describes seeing Camden herself for the first time. “He was responding to me and acting like any baby would,” Robinson recalls. “I remember thinking—we have something special here. This is my baby.”
Family-centered approach to care
With each day, the family leaned on advice from the Texas Cleft-Craniofacial team.“When something didn’t work with feedings or with a device to help try and correct Camden’s lip, Dr. Greives and his team answered our questions,” Robinson says.
“We work with the UTHealth School of Dentistry to fit NAM devices for these kids,” explains Dr. Greives. “NAM is short for nasoalveolar molding appliance. The goal is for the device to bring everything as close together as possible for surgery. It is similar to a retainer used in orthodontics.”
When the NAM device didn’t work, Dr. Greives recommended a lip adhesion surgery when Camden was two months old. It was the perfect thing for him.
“That’s why we are here,” says Dr. Greives. “We want parents asking questions. We are all working together in the best interest of these kids. We want their smiles to shine and them to flourish.”
Following Camden’s initial surgery, he had an additional lip procedure at the age of six months old and again as an 18-month-old to close his palate. Today, he is busy zooming around the room with a toy motorcycle during his parents’ interview. He will proudly say, in a spunky voice, that his name is Camden and he is three years old.
“He is the strongest person I know,” says Trotter, Camden’s father. “He has the heart of a lion. I am amazed at the things he can do.”
Dr. Greives points out that children do not know there is any type of challenge. “Their smiles may be a bit different, but that is it,” Dr. Greives says. “All of my parents have loved their baby’s smile throughout all of the stages of treatments. They fall in love with their baby’s unique smile.”
Continuity of care
Over the course of their lives, babies born with cleft lip or palate, or both, will go through five to seven corrective surgeries. As an affiliated physician with Children’s Memorial Hermann Hospital, Dr. Greives points out that continuity of care into adulthood is important and can be provided by UT Physicians.
“As these children grow and need more surgeries, sometimes as adults, we simply transition to Memorial Hermann Hospital to see to their surgical needs,” says Dr. Greives. “It’s one reason why I appreciate the relationship between UT Physicians, UTHealth and Memorial Hermann. It allows us to do so much more.”
July is National Cleft Lip and Palate Awareness Month, which seeks to raise awareness and improve everyone’s understanding of facial differences.
“We should celebrate our unique qualities,” says Dr. Greives. “They make us who we are.”
Smiles are contagious
A special exhibit is on display through October 2018 at Memorial Hermann-TMC. Portraits of children born with cleft palate and other facial differences will celebrate their unique smiles.
Rick Smith Gallery | 6411 Fannin, St. Houston, 77030