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Building a Team for the Treatment of Cleft Kapi‘olani’s nationally certified program addresses patients’ complex needs Charles Neal, M.D. Charles Neal, M.D., knew there was a higher incidence of cleft among babies born in Hawai‘i than those born on the Mainland. Here it is about one in every 500 live births compared with about one in 750 for the rest of the country. The difference is attributable to Hawaii’s populations of Asian and Pacific Islanders. With 18,000 births per year, the incidence rate means about 35 babies are born with clefts in Hawai‘i each year. Dr. Neal also knew these children typically require multiple surgeries and a lot of follow-up care. At any given time, about 700 kids and their families need special care in Hawai‘i. What Dr. Neal and fellow neonatologist Lynn Iwamoto, M.D., recognized was that the state lacked a centralized site for comprehensive coordinated care and follow-up that these children require to thrive. A cleft lip is an opening in the lip; a cleft palate is an opening in the roof of the mouth. The openings result from incomplete development very early in pregnancy. The treatment of cleft calls for a multidisciplinary approach because “everything is so connected,” Dr. Neal says. “You can have issues with speech and hearing, physical development, psychosocial development, and quality of life. On average, children will have five surgeries by the time they are 18 years old. That’s a lot of surgical intervention and it’s not a benign thing. Surgeries happen at different stages of development up through adolescence.” State’s Only Cleft Program Lynn Iwamoto, M.D.. Drs. Neal and Iwamoto, and others at Kapi‘olani started discussions in spring 2007 about what could be done. The efforts to bring a holistic approach to cleft led to the formation of the Kapi‘olani Cleft and Craniofacial Center. Drs. Neal and Iwamoto, both neonatologists, are co-medical directors. The Kapi‘olani group met in May 2007 with the state Department of Health, which provided data on congenital anomalies in Hawai‘i and the incidence of cleft. “Things then developed very fast,” Dr. Neal says. “We held our first clinic in November 2007, had six patients and planned to hold a clinic every other month. By February 2008 we went monthly because we were so busy. Today we hold clinics three times a month to meet the growing demand.” Jayden’s Story Patient Jayden Gonsalves-Agdeppa before and after her corrective cleft surgery. Jayden Gonsalves-Agdeppa, now 1-year-old, is one of the early beneficiaries of the Cleft Center. “We learned she had cleft at about the fifth month of pregnancy,” says Jayden’s father, Ben Agdeppa of Kaua‘i. “On the day of her delivery, my wife and I cried and were at a loss for words. It’s hard to describe how we felt. We were just thinking, ‘Why? Why does she have to suffer?’ We didn’t understand how these things sometimes happen until we came to Kapi‘olani and they educated us.” The couple soon learned how difficult it can be to care for a baby with cleft. “The only way it was possible to feed her was to do it together,” Jayden’s father explains. “One of us would fill a syringe with formula while the other would feed her. We would place the syringe on an index fingertip or our pinkie with a glove over it to mimic a nipple. Then we would apply pressure gently to the syringe so Jayden wouldn’t choke as she sucked. We fed her every few hours and the first three months were a very stressful time.” Before the Center was established, parents were forced to seek care for their children on the Mainland, or receive partial care in Hawai‘i, or even go without treatment. Kapi‘olani’s Center was certified in 2008 by the American Cleft Palate–Craniofacial Association, an international nonprofit society of health care professionals treating and conducting research for these conditions. “The staff at Wilcox Hospital first referred us to Kapi‘olani’s Cleft Center,” says Jayden’s dad. “It was scary for us because we didn’t know what to expect. The doctors here opened our eyes and changed the way we felt. The team here is great. They handle their patients and parents with a lot of compassion. They tell us both the good and the bad about what may happen. There are no surprises and it’s very reassuring.” Jayden underwent a procedure to repair her lip at 6 months, her palate at 1 year, and is now scheduled to visit Kapi‘olani twice a year. The surgery was performed by Granger Wong, M.D., D.M.D., FACS, a new member of the Center’s multidisciplinary team. Kapi‘olani’s Cleft and Craniofacial multidisciplinary team meets regularly to review cases and develop treatment plans for its rapidly growing roster of patients. “We will face the next stage in another four or five years,” Jayden’s father says. “The lip repair turned out way better than we anticipated. That boosted our confidence a lot. The staff at Kapi‘olani have always reassured us that we have options. We even had the option to fly to Tennessee if we were not comfortable with the surgeon they brought in. But Dr. Wong was very skilled. I didn’t think twice about Tennessee after meeting him.” The Center has become the central point for pediatric care for children with cleft and craniofacial conditions in the state. Kapi‘olani has assembled more than a dozen specialists to see that Jayden and others like her thrive, Dr. Neal says. “As the children’s hospital for Hawai‘i, we are providing the very best care, including bringing in specialists from the Mainland when needed. As a result, we have comprehensive care that is equivalent to Mainland programs. Now children born with cleft in Hawai‘i can achieve their full potential.” “As the children’s hospital for Hawai‘i, we are providing the very best care, including bringing in specialists from the Mainland when needed. As a result, we have comprehensive care that is equivalent to Mainland programs.”