Three surgeries by age one: Jude Trigo's journey with a cleft lip and palate

For typical newborns, breathing and eating are normal, automatic functions, but for babies born with a cleft lip and palate, these basic functions are neither simple nor guaranteed, turning every breath and every bottle into a delicate task. A cleft condition can leave significant gaps where parts of the nose or mouth should be, altering the infant's appearance, breathing and eating functions dramatically until surgical interventions can begin at an appropriate age.  

For Carly Trigo, a former nurse at Children's Hospital New Orleans and now a mother of two, these were not just professional observations, but a personal ordeal. Her son Jude was born with a wide cleft lip and palate, launching their family into a life filled with ongoing medical care and many questions. 

During a routine 20-week ultrasound after Carly became pregnant with Jude, they encountered another unforeseen challenge when a cleft in their unborn son’s lip and palate was detected. Carly's background in pediatric nursing prepared her to manage complex health issues. Nothing, however, could fully prepare her for the emotional journey of navigating her own child’s congenital condition. Due to her pregnancy taking place during the COVID-19 pandemic, Carly received the difficult diagnosis alone while her husband, Andrew, waited outside in the car. From these circumstances surrounding Jude’s diagnosis, to the series of surgeries that marked his first year of life, Carly faced each challenge with a strength built by her dual roles as both a nurse and a mother. 

"Jude’s start to life has been difficult, but the support from everyone at Children's Hospital New Orleans has been pivotal," Carly said. "As we settle into life with Jude, now a spirited three-year-old, it's clear that their expertise and compassionate care have made a huge difference. The team’s dedication to Jude’s medical needs and his overall well-being has given us a foundation to keep growing as a happy and healthy family." 

The situation prompted an immediate transfer of her prenatal care to Children's Hospital New Orleans, where a specialized cleft team took over. "The most helpful thing was that they relieved so many of my anxieties with clarity about what was going to happen. They had a clear understanding and a step-by-step plan right off the bat, before he was even born," Carly recalled, emphasizing how important the cleft team’s communication skills were. 

The Trigo family had already been acquainted with Dr. Reita Lawrence, a pediatrician at Children’s Hospital New Orleans, for their daughter’s autism diagnosis. "Having known Carly and her family for some time, it was essential for us to provide the detailed, compassionate care they needed during such a challenging period," said Dr. Lawrence. "We knew they had additional needs to care for their daughter at home, and we wanted to ensure they felt supported and informed every step of the way." 

Jude was born just before Thanksgiving Day in 2020, a day that marked the beginning of constant decision making about his medical needs. Despite his significant facial differences, including a substantial gap where his left upper lip and nostril floor should have been, Jude was surprisingly breathing on his own and could even drink from a bottle in his first days of life. 

"Although his condition as a newborn was severe, he managed incredibly well at first. However, he started to experience some breathing difficulties by the third night," Carly said. This prompted a brief but important stay in the Neonatal Intensive Care Unit (NICU), which included nightly check-ins and constant communication that reassured Carly, especially given the needs of their daughter with special needs at home. 

During this intense period, the collaboration between the hospital’s certified lactation counselors and the cleft team was vital. The lactation team provided a specially designed bottle with a one-way valve to accommodate Jude’s inability to create suction, essential for his feeding since Jude couldn’t nurse or use a regular bottle.  

Carly reflected on this innovative solution with deep gratitude, "Their support and proactive planning helped to give Jude the early strength he really needed and gave us a lot of peace of mind that helped us support him as parents too." 

Mohamad Masoumy, FACS, MD, MS, a plastic surgeon at Children's Hospital New Orleans,performed all of Jude’s surgeries. Coincidentally, during Jude's birth, Carly was pleasantly surprised to see Dr. Masoumy's wife had just given birth to their child in the same hospital. "Seeing Dr. Masoumy and his wife welcoming their own child down the hall reminded me of the shared humanity and dedication of the medical staff," Carly recalls. "It was a special moment of connection for me in the middle of Jude’s birth story." 

The first year of Jude's life was marked by three critical surgeries to address his cleft lip and palate, each with their own unique challenges. The process began at just three months old with the first surgery, a lip adhesion, which brought together the two parts of his lip that were very separated. Jude underwent weeks of meticulous daily taping at home before the first surgery, where Carly and Andrew had to apply a stretchy elastic tape multiple times a day to stretch Jude's skin in preparation for the surgery. 

By the time Jude was six months old, he underwent a more involved definitive cleft lip repair. This second surgery not only addressed the skin but involved muscle and tissue, making it significantly more challenging. This would prove to be a tougher surgery on him, involving more pain and some difficulty getting him back to feeding. The surgery lasted several hours and led to many sleepless nights and a demanding recovery period. A week after the second surgery, Jude was sedated again to remove the stitches and other surgical materials, which posed another challenge in his feeding and recovery process. However, Carly recalls that Jude bounced back remarkably quickly, allowing him to transition to eating baby foods and drinking more successfully from bottles designed for his condition. 

The third surgery occurred just before his first birthday and was the most extensive and difficult one yet – a cleft palate repair. This surgery was internal, focusing on reorienting all the muscles of his soft palate, and closing the defect. "It was a lengthy process, which included the three-hour surgery, pre- and post-operative care, and other important evaluations requiring anesthesia and involved significant pain management and dietary restrictions," Carly explains. Jude once again didn't want to eat post-surgery and had to be placed on a liquid diet for a while. Additionally, he had to wear arm restraints for several weeks to prevent him from pulling at his stitches, which as most new parents know, was not a fun experience for the family. 

However, these surgeries were not only transformative in improving Jude's ability to eat and speak but also dramatically changed his appearance. For the first time, Jude’s parents could see what his face looked like behind the cleft palate. "To go from missing part of his face to seeing his beautiful face was so amazingly incredible," Carly shared. "It provided immense emotional relief to our family and brought us many tears of joy. He was so handsome!" 

Dr. Masoumy elaborated on the medical intricacies involved: "The surgeries for children with cleft conditions require precise surgical techniques to not only close the visible gaps but also to reconstruct the underlying bone structure and muscle alignment for both functional and aesthetic restoration. Each procedure is tailored to the child's developmental stage, ensuring that the surgery supports their ongoing growth and facial development. For Jude and many children like him, this involves a series of surgeries that can span their entire childhood; a strong early start makes a big difference." 

This careful and compassionate approach has allowed Jude to overcome the initial hurdles of his condition, setting a strong foundation for his continued growth and the surgeries that lie ahead. 

As Jude continues to grow, the focus of his medical team will shift toward surgeries that emphasize long-term functionality and aesthetics rather than immediate correction. The next significant step in Jude's treatment is a bone graft from his hip to address the missing bone in his upper jaw. This procedure is intricately timed to coincide with his developmental stages and the alignment of his teeth. The timing of the bone graft surgery will depend on Jude’s dental development. Ideally, his own bone will be used for the graft, but if necessary, donor bones can also be utilized to fill in the missing bone. 

Jude, now at home and awaiting his next medical needs, is a testament to the resilience and adaptability often seen in children facing early medical challenges. In addition to preparing for future surgeries, Jude attends speech therapy to help improve his communication skills, a common necessity for children with cleft conditions. He also participates in other therapeutic activities designed to support his overall development and recovery. He’s thriving, not just physically but in his joyful engagement with the world around him. His surgeries have greatly enhanced his ability to eat and speak, and his parents love to see him so expressive and interactive. 

The positive atmosphere in the Trigo household is a far cry from the apprehension that marked Jude's early diagnosis. "The support from Dr. Lawrence, Dr. Masoumy and the entire team at Children's Hospital New Orleans has transformed our lives," Carly said. "They've provided us with medical care and the confidence to handle whatever comes our way." 

Throughout their journey, Carly found strength not only in the medical expertise of the team at Children’s Hospital New Orleans but also in faith. She and her family began a novena to St. Jude after the initial diagnosis. "The prayer to St. Jude gave us hope and a sense of peace during the most uncertain times," Carly reflected. "It's a reminder that even in the darkest moments, there is always light. That's where we got his name." 

Carly's advice to other parents facing similar journeys is heartfelt and practical: "Trust in the expertise of the professionals who are dedicated to your child’s care. They have the experience and the compassion necessary to guide you through these challenging times. We are deeply grateful for the personalized care and genuine concern we’ve received. Visiting Children's Hospital New Orleans is more than just surgeries and medical appointments; it feels like visiting family." 

For families seeking more information on the specialized care provided to children with cleft lips and palates, visit www.chnola.org/services/craniofacial-center/