With a great big chomp, Beau Mannion, 1, digs into his favorite delicacy – a donut. Frosted or covered in sprinkles, he loves them all. One year earlier, his way of eating was very different, and his family considers sinking his teeth into a sweet treat to be a miracle.
At Sarah Mannion’s 19-week ultrasound, doctors at Mass General for Children (MGfC) discovered that her son, Beau, had a cleft lip and palate, a congenital condition in which the roof of a baby’s mouth and/or lips do not fully close or form during pregnancy. Sarah and her husband, Gill, of Braintree, Mass., felt lost.
“We didn’t know anyone who had a cleft lip and palate or whose children had it,” said Sarah. “As far as we knew, it happened at random and we were the lone family going through this.”
The Mannions were soon welcomed into MGfC’s Fetal Care Program by Karen Parsons, RN. The Fetal Care Program provides care to babies who have various unexpected congenital abnormalities or genetic conditions. It also provides prenatal testing and monitoring for high-risk or complicated pregnancies. Engaging with families early on is key to building partnerships between families and providers.
“The first time I met Sarah and Gill was right after the diagnosis, when they did not know anything about cleft lip or cleft palate,” said Parsons, the nurse coordinator for the Fetal Care Program. Parsons scheduled appointments on the Mannion’s behalf and stayed by their side throughout the day of their appointments.
“At the end of the day, Sarah and Gill told me they would call me Tom Brady because I handle anything,” said Parsons.
Parsons also arranged a visit Eric Liao, MD, PhD, of the Cleft and Craniofacial Center at MGfC and Shriners Hospital for Children - Boston. Liao, a plastic surgeon and director of the Cleft and Craniofacial Center, reassured the Mannions that they were in good hands.
Beau was born via C-section on April 11, 2019. Born with a lack of surfactant (a liquid made by the lungs that keeps the airways open), he was intubated and whisked off to the Neonatal Intensive Care Unit (NICU) at MGfC. Twelve harrowing hours later, Sarah and Gill held Beau for the first time, and little Gill, 2, met his new baby brother.
Eight days later, the Mannions headed home as a family of four, but it was anything but easy.
“He cried for 22 hours a day. When he ate, he vomited through his nose because the roof of his mouth wasn’t fully formed,” said Sarah. “He stopped gaining weight because he couldn’t keep anything down.”
Test after test came back normal, yet Beau cried and cried. The Mannions tried everything they and Beau’s care team could think of – different bottle and nipple shapes, special formulas, various feeding positions and consults with multiple providers.
Shortly before Beau was hospitalized at 3 months old, Sarah Kadzielski, MD, of Pediatric Gastroenterology and Nutrition, met Beau and wondered if he was taking in too much air when he ate – and she was right.
“The Mannions have such grace as a family. Both Sarah and Gill are gentle advocates for Beau by being open and willing to try anything and telling us what worked or didn’t work,” said Kadzielski. “That’s where the true partnership came to life. They know their son best and they helped me help them by figuring out the best next steps.”
During Beau’s hospitalization, Elise Drew, RN, an inpatient pediatric nurse on Ellison 17, took the Mannions under her wing during Beau’s stay.
“There is no such thing as caring just for the patient, especially in pediatrics,” said Drew. “You care for the family as a whole. I spent time with Sarah and Gill and just listened to what they had to say. I think that made a big difference for them.”
In September 2019, Beau had his first surgery to repair his cleft lip and palate. With help from Pediatric Gastroenterology, Pediatric Surgery, the Fetal Care Program and others, the Mannions also decided to fit Beau with a feeding tube. Cassandra Kelleher, MD, a pediatric surgeon, placed the tube and Liao performed the cleft repair. Soon after, Beau began to gain weight and earned his place on the growth chart for the first time in months.
Even though Beau ate through his feeding tube, the Mannions worked with the Pediatric Feeding Team to ensure that eating was a positive experience. “We made sure he sat with his family at the table and that he had plenty of opportunities to taste and feel his food, even if he didn’t actually eat it,” said Lara Hirner, MS, CCC-SLP, a speech and language pathologist at MGfC. “It was a matter of trying something, then getting feedback from Sarah and Gill and adapting from there.”
Beau’s final surgery took place in March 2020, shortly before the hospital went into lockdown amid the COVID-19 crisis. “We combined his second and third surgeries into one, knowing that the hospital was going to be in lockdown soon,” said Liao. “We were able to complete the palate repair and the definitive lip repair. The great outcome of the first surgery had set us up for success.” Soon after, Beau continued to thrive and was voracious to try new foods. Discovering the donut was a watershed event.
Children who have cleft lip and palate illustrate just how intricate and necessary multidisciplinary care at MGfC truly is. They often see providers from the Fetal Care Program, Cleft Lip and Palate Program, Pediatric Feeding Team and more. During the COVID-19 crisis, the multidisciplinary cleft clinic continued to provide consultations virtually.
“The main message we give to families is that we will teach them everything they need to know and that it will be okay,” said Liao. “The families’ reactions after surgery are priceless. They all shed such tears of joy that roll down the cheek that I’ve nicknamed them ‘tears the size of jellybeans.’ It means a great deal to us and the family because we have a relationship that began before the child was even born.”
This is exactly what happened with Beau, who is a spitting image of his father with bright red hair and sparkling blue eyes. “Beau loves life. He is so happy now, and nothing bothers him or scares him,” said Sarah. Since his last surgery, Beau has been weaning off his G-tube and learned how to eat and drink by mouth.
“The name Beau means beautiful, and that’s what he is,” said Liao.