“When you find out you are pregnant, you expect to have a perfectly healthy pregnancy and at the end a perfectly healthy baby,“ states Paris, mother of (now) 17-month-old Maverick. “It took me a long time to come to terms with his diagnosis, but now I look back and realize how blessed we are to be his parents,” she says.
Paris and husband, Tyler found out they were expecting a baby on June 19, 2019. She had ultrasounds every 2 weeks during the beginning of her pregnancy, since their older son was born prematurely. During her 19 week ultrasound in September, the OBGYN found what she believed to be a bilateral cleft lip and palate. In the US, approximately 4,440 babies are born each year with a cleft lip, a condition in which the top lip fails to form completely. As a result, some of these children are also born with a cleft palate, a condition where the muscles in the roof of the mouth fail to form completely. Every year, more than 2,650 babies in the US are born with a cleft palate. If not treated, these conditions can lead to speech and hearing problems, ear infections and problems with feeding. Pediatric plastic surgeons are trained in cleft lip and palate surgery and can reshape the bones of the face to improve appearance and function. During reconstruction, they can also repair the cartilage and soft tissues of the face, lips, palate, nose and tongue.
Paris and Tyler live in Benton, MO, approximately 2 hours from the St. Louis Metropolitan area. It was recommended to the couple that they seek consultation immediately with a SLUCare maternal fetal medicine specialist.
Within the week, Paris and Tyler made the trip to St. Louis and met with their new SLUCare OBGYN. The baby’s diagnosis of bilateral lip and palate was confirmed, along with a suspected heart defect (VSD or ventricular septal defect). They also found out they were having a boy! Because of both the known and suspected diagnoses, Paris was encouraged to have an amniocentesis, and was referred to the St. Louis Fetal Care Institute at SSM Health Cardinal Glennon Children’s Hospital. The amniocentesis returned normal, and her visit to FCI was scheduled for October 2019.
Once at The Fetal Care Institute, Paris had a fetal echocardiogram. There was no congenital heart defect found, and both she and Tyler were relieved that they could focus their attention on what was needed for his cleft lip and palate. The day of this visit, they were introduced to Joy Baltz, RN BSN | Clinical Nurse Coordinator – St. Louis Cleft-Craniofacial Center/ Division of Pediatric Plastic Surgery. “Without overwhelming us with details on the first day, she gave us the perfect amount of information to digest, and we had the beginnings of a plan,” said Paris. “A friend of ours knew Dr. Alexander Lin, Director of the St. Louis Cleft-Craniofacial Center. Her daughter had a cleft lip and she was extremely happy with the results of her surgery. We asked Joy if we could request Dr. Lin to care for Maverick, and from that day on, he’s been Maverick’s surgeon, “ said Paris.
“I followed up with my SLUCARE OB monthly, and we planned to deliver Maverick at SSM Health St. Mary’s Hospital,” said Paris. “Tyler and I wanted to deliver near Cardinal Glennon in case Maverick needed any extraordinary measures when he was born. At our hospital in Cape Girardeau, they may see 3 cleft babies per year, whereas St. Mary’s may see 3 per week. It gave us a lot more comfort to know that clinicians would know how to handle Maverick if he got into trouble,” Paris said.
Maverick was born at 39 weeks gestation on February 3, 2020. Delivery went smoothly and there was no need for intensive care of any kind. Maverick’s bilateral cleft lip and palate were noted to be “complete”. A complete lip indicates that the cleft extends from the lip all the way into the nose. A complete cleft of the entire palate involves the length of the primary and secondary palate. While he presented with no immediate breathing or feeding issues, Paris and Tyler knew enough from what they had been taught, plus their own homework, that prompt, proactive intervention was necessary with Maverick to prepare him for future success.
Just three days following delivery, Maverick had his first visit to the Cleft Clinic at SSM Health Cardinal Glennon. Paris and Tyler were able to meet all of the team members who would prove vital to Maverick’s roadmap of therapy. The St. Louis Cleft-Craniofacial Center is specifically designed to include both pediatric plastic surgeons as well as specific support specialties and staff such as pediatric dentists, nurses, and speech language pathologists. Together, the team is designated an Affiliated Team by the American Cleft Palate-Craniofacial Association (ACPA), the governing association of cleft-craniofacial centers.
In most babies, a series of surgeries can restore normal function and achieve a more normal appearance with minimal scarring. The lip repair is addressed first. In babies born with cleft lip, surgery is generally recommended between three and six months of age. In Maverick’s case he had a bilateral cleft lip and very wide opening. He needed an additional procedure (a lip adhesion surgery) at 6 weeks of age to bring the widened lip closer to midline before the complete repair could be done. Dr. Lin recommended that Maverick use the DynaCleft positioning strips pre-operatively over a course of several weeks. The strips have an adhesive on each end to grip the skin, and an elastic silicone center which gently pulls the cleft lip together and responds to the baby’s movement. The tension from the silicone helps reposition the lip and tissues to improve the cleft lip surgery for better cosmetic and functional outcomes. In addition to the strips, Maverick also had an intra-oral orthodontic mold called a NAM (nasal alveolar molding) to help align his lip and nose. The strips are changed daily, and the products are not covered by insurance. In 2020, SSM Cardinal Glennon Children’s Foundation supplied funding to provide this innovative DynaCleft system for families who cannot afford the out-of-pocket expense or who have limited resources.
The next 5 weeks with Maverick involved daily strip replacement, weekly visits to the dentist at SSM Cardinal Glennon for NAM adjustments, and anxious anticipation of his first surgery. Paris and Tyler both recall the “partnership” they felt with Dr. Lin and his team. “Dr. Lin presented his recommendations to us with confidence and with what he would recommend for his own child; however, he always gave us choices and alternatives, encouraging us to make our own decisions, based on our own family,” Tyler said.
Maverick had his lip adhesion surgery at 6 weeks of age on March 16, 2020. He recovered well and had nasal stents to be worn for several weeks post repair. The stents are essential to help raise and shape surrounding skin and cartilage for optimal healing and results. The day they were discharged on March 17, “shutdown” restrictions for COVID-19 went into place.
Maverick was scheduled to have his full bilateral cleft lip repair at 6 months of age. Prior to this surgery, Maverick needed a COVID-19 test. He also needed a special palatal plate mold made that would be placed during the lip surgery. This mold would screw in to the top of his mouth, and stay in place until his palate surgery could be done. Given that the family lives 2 hours away, Maverick’s team coordinated efforts and made sure that the family could accomplish these tasks in ONE pre-op visit. The family traveled to St. Louis on a Friday, and both the test and the mold were completed. Maverick’s dentist made his molded plate over the weekend in order to accommodate the family’s anticipated Monday surgery date. Maverick had his full lip repair on July 27. Following that repair, Maverick had both 2-week and 6-week postoperative visits. He also wore nasal stents for approximately 4 months. Paris recalled the frequent emails she sent Joy in-between their visits to the hospital. “She always answered my questions promptly and respectfully. I never felt hesitancy asking questions, because she encouraged me to do so, and treated me like family,” said Paris. “Joy is truly the glue of the Cleft team at Glennon. She is always available and really mothers ‘her’ babies,” said Paris.
Maverick’s cleft palate repair was on March 3, 2021 at age 13 months. The palatal plate had exceeded its job and enabled a full palate closure. He had routine post-op visits, and his skin and tissue healed beautifully. In Spring of 2021, Maverick was released to annual cleft clinic visits. He may some surgeries in his future; however these would be more cosmetic than functional in their objective.
“Dr. Lin is the reason that Maverick is the way he is. He’s an amazing physician, and an even BETTER person. We are most grateful for his knowledge and his personable demeanor. We feel like we could speak to him about ANYTHING. Dr. Lin gave us the sense of confidence we needed during the scariest time in our lives. He reassured us with a plan from the beginning, and walked with us as partners caring for Maverick through each and every stage,” Paris said. “Cardinal Glennon made our situation with Maverick so much easier, with their knowledge and expertise and the way they treated us like family and with so much respect. We are so proud of our Maverick. Our obstacles turned into milestones conquered, and we hope that his story helps other families.”