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news item News Wednesday, June 26, 2019 Wednesday, June 26, 2019 10:39 AM - Wednesday, June 26, 2019 10:39 AM

Cleft lip and palate awareness - Max's story

July is Cleft and Craniofacial Awareness Month. Orofacial clefts, including cleft lips and cleft palates, are among the most common congenital malformations. It is estimated that one out of every 700 babies is born with a facial cleft (source). At Shriners Hospitals for Children — Boston, families have access to world-class care at the Cleft and Craniofacial Center, a collaboration with MassGeneral Hospital for Children. This month, we would like to introduce you to some of our patients, share their stories and update you on the progress they are making.

For many parents, the joy of expecting a baby can be interrupted by anxiety when they learn their baby has a cleft lip or palate. For first-time parents, Qriss and Peter, their 19-week ultrasound quickly took an unexpected turn when the routine test showed a shadow on the baby’s face that doctors suspected was a cleft.

The parents’ initial reaction was fear of the unknown. First, they wanted to confirm the extent of the cleft and whether or not it was associated with any other syndromes. In the days that followed the ultrasound appointment, Qriss and Peter immersed themselves in the world of clefts to learn as much as they could about what the diagnosis could mean for their baby. They decided to have an amniocentesis, a more in-depth prenatal test that extracts amniotic fluid in order to test for developmental abnormalities.

From the amniocentesis, Qriss and Peter learned the cleft was not associated with any other syndromes. An MRI showed them it was only a cleft lip and did not involve the baby’s palate.

Through her extensive research about cleft specialists, Qriss knew she wanted to work with Eric C. Liao, M.D., Ph.D., co-director of the Cleft and Craniofacial Center at Shriners Hospitals for Children — Boston. Qriss and Peter met Dr. Liao during one of their prenatal appointments at Massachusetts General Hospital. Peter said that from that first meeting, they knew they were in the right hands. “Knowing Dr. Liao would be with us through the time our baby heads off to college made us feel so much better.”

“At Shriners Hospitals for Children — Boston, we meet children and families at all different stages of the cleft journey,” said Dr. Liao. “What we do especially well is meeting families during the prenatal stage, when expectant parents have just learned of their baby’s cleft. The sooner we can put a plan in place, the sooner we can help alleviate much of their anxiety. Our prenatal consultation program underscores our commitment to caring for the whole family.”

Dr. Liao and the team at the Boston Shriners Hospital were able to walk Qriss and Peter through their baby’s expected journey from birth through his adolescent and teen years. Empowered with knowledge and a care plan, Qriss and Peter were able to wait out the rest of the pregnancy with much less anxiety. They felt prepared to welcome a baby with a cleft. About their meetings with the cleft and craniofacial team, Qriss said, “Everyone is an absolute angel. Until they opened their arms to us, we did not understand the magnitude of their care.”

Max in hospitalMax in walkerMax at home

When Qriss and Peter welcomed baby Max, Dr. Liao was one of the family’s first visitors. One week later, Max had his first appointment at Shriners Hospitals for Children — Boston. Max’s care team includes a surgeon, a speech pathologist, a dietitian, nurses and a care manager. Everyone works together to deliver multidisciplinary, family-centered care for every patient. A few months later, Max was ready for his first surgery to repair his cleft lip. The surgery went well and Max was a champion during the recovery process.

A few days after his first surgery, Max had an accident at home that resulted in his stitches opening up. It was early on a Saturday morning. Qriss and Peter rushed Max back to the Boston Shriners Hospital. A member of the cleft team came in to examine Max and they decided to open up the operating room on Sunday morning to repair Max’s lip again. On Easter Sunday, the surgical team convened to ensure Max got the care he needed in a timely fashion. Additionally, the entire care team was on hand to support Qriss and Peter, who felt terrible following the accident.

Recovery the second time around was a bit tougher for the infant, but overall, he managed well and day-by-day Max healed. Qriss and Peter attribute much of the recovery success to the Shriners nurses and facilities staff. Peter said, “The care they gave our family was beautiful. They made everything so much easier.”

Now several months after his surgery, Max is a happy, active baby. Qriss and Peter report that he is thriving. “We loved his initial smile, but Shriners gave us a whole new smile to fall in love with,” said Qriss.

They hope their story can help other expectant parents who are just embarking on their cleft journey. Qriss said, “Knowledge is power and it gives you a sense of control, so learn everything you can about meeting your baby’s needs.”

They also want parents to know that it is okay to be angry, sad or scared following a cleft diagnosis. “It’s okay to be afraid,” said Peter. “I have never felt that kind of fear but I’ve learned acceptance of your baby’s cleft is a process and fear is part of it.”

Most importantly, Qriss and Peter want to remind people of something they had to keep reminding themselves: “Whatever struggles you may have, it’s all temporary. The cleft is temporary. Enjoy your baby. It’s an exciting time.”

Thank you to Max and his family for sharing their story. We think Max’s new smile is awesome too!