Cleft Lip and Palate: Sapphira’s Story
Patient Story Highlights
- Sapphira experienced feeding problems from the start because of her incomplete lip. She had trouble gaining weight.
- Cleft lip repair often occurs in two stages, with an initial procedure at about 2-3 months old and then another two to three months later. Sapphira’s case qualified for a one-stage repair.
When Regina learned midway through her pregnancy that her baby would have a cleft lip and palate, she turned to a longtime friend.
Growing up in St. Petersburg, Florida, she had a broad support group, and along with her fiancé, Damien, was excited about the baby. But Regina remembered one friend’s baby also had been born with cleft lip and palate, a common birth defect in which the baby’s upper lip and the roof of the mouth don’t form properly.
Regina knew the basics about cleft through Internet research, television advertising and support groups through social media. But having a trusted friend who had experience with the condition and treatment was invaluable to Regina and Damien.
“She was the person I leaned toward when I first found out about it,” Regina says. “She helped me along my journey getting prepared.”
The friend suggested Regina arrange for treatment at Johns Hopkins All Children’s Hospital where her own baby had been treated. When Sapphira Reign arrived, Regina and Damien were ready.
Jordan Halsey, M.D., met Regina and Sapphira 12 days after the baby’s birth. Halsey, a pediatric plastic and craniofacial surgeon at Johns Hopkins All Children’s, outlined her plan to treat Sapphira.
Regina was impressed.
“I felt confident in her,” Regina says. “She explained everything to my fiancé and me, and she answered all of our questions. She assured us everything was going to be fine.”
When a patient is diagnosed with cleft — either prenatally or postnatally — the cleft and craniofacial surgeon develops a plan specific to that patient. Johns Hopkins All Children’s craniofacial surgeons are available for the initial consultation on the main campus in St. Petersburg or at Outpatient Care locations in Brandon, Sarasota or Tampa. Part of the discussion is the potential for feeding challenges and resources available, including a special baby bottle designed for cleft patients.
Sapphira experienced feeding problems from the start because of her incomplete lip. She had trouble gaining weight.
“It was a challenge because I was breastfeeding her, but I was also trying to get her to take the bottle,” Regina says. “She struggled with the bottle, and she could only breastfeed on one side because the lip was hindering her.”
A lactation consultant and speech-language and feeding pathologists (SLP) at Johns Hopkins All Children’s provided tips and strategies for different ways to hold Sapphira and different feeding techniques. Sapphira responded best to breast feeding on one side and techniques that optimized suction during feeding.
“I loved working with them,” says speech-language and feeding pathologist Paige Cothran Hampton, MA, CCC/SLP. “We helped make sure she ate and gained weight before her structure was repaired to get her ready for her cleft surgery. She was followed by our inpatient SLPs right after her surgery to make sure she started back feeding and then again by me outpatient after her discharge from the hospital for couple of visits to make sure she was eating well once she got home again and starting to transition to complementary feeds.”
Cleft lip repair often occurs in two stages, with an initial procedure at about 2-3 months old and then another two to three months later. Sapphira’s case qualified for a one-stage repair, which Halsey performed March 28 when Sapphira was 4 months old.
“I must say my fiancé and I were very anxious,” Regina says. “We were glad that the surgery was finally going to happen. Before arriving to the hospital, we contacted our families and prayed over Sapphira Reign, the doctor and medical staff that was going to be involved for it to be a positive outcome.”
Regina is a stay-at-home mother, so her contact with Sapphira over those three months had been near-constant, producing separation anxiety for mother and daughter when it came time for surgery.
“She did not want to let go,” Regina says. “She started crying, and I began to tear up. After the procedure was over and we all were reunited again, it was a huge relief.”
Mother, father and doctor were happy with the results of the operation. Halsey also corrected Sapphira’s nasal structures.
“She did great!” Halsey says of Sapphira. “We took out the nasal conformers a couple of weeks later and her nose looked great, just like her lip.”
Sapphira will follow up with the cleft and craniofacial team every year or two. She will need another procedure when she is 8 to 10 years old when she is losing her baby teeth to repair her alveolar cleft, which is at the upper gum line.
“She just has the most beautiful smile,” Regina says. “It was almost like she never had a cleft lip! There were times we missed her old smile, but we know deep down that we did what was best for our baby. We are just so happy to see that big contagious smile that we know and love and matches her big beautiful eyes!”