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| HealthTuesday, March 25, 2008 2:14 PM CDT |
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Cleft palate no longer impedes child's smile
Blake Meyer, age 2 1/2, was making animal sounds for Donna Evans. She'd point to a picture of an animal and he'd make the appropriate sound. When he got to a picture of a baby, he didn't make a sound but picked up his old baby bottle and pretended to feed the child. But it wasn't just any bottle. And Evans isn't just any playmate. The bottle is a Pigeon Feeder, a special nursing bottle for infants with cleft palate. The bottle was the same one that Blake used when he was an infant after Evans, a speech pathologist, taught Blake's parents how to use it. Blake was born with a complete, unilateral cleft lip and palate on his left side. He had an opening in the skin of his upper lip that extended all the way to the base of his nose and an opening in the roof of his mouth and nasal cavity that extended all the way to the back of his mouth. After 2 1/2 years of surgeries, a staph infection, and feeding, speech and developmental therapy, the Bloomington boy is doing well, according to his parents, Evans and his surgeon, Dr. Jonathan Bailey. The location of the cleft is unrecognizable unless you're looking for it, although Blake needs future surgeries on his gum line and nose. "To be born with a significant cleft and to be following a normal developmental sequence -- you can't ask for anything better than that," said Evans, who is with Speech & Language Rehabilitation Services, Bloomington. Blake laughed. "He is just personality-plus, isn't he?" Evans said. Bailey, medical director of the cleft team at Carle Clinic in Urbana, said that while Blake will have additional surgeries, "he should have a pretty normal childhood and adulthood. "Blake has done well," the oral maxillofacial surgeon said. Blake's life wasn't always so bright. But his parents, Tod and Laura Meyer, want to share Blake's story to educate other parents and parents-to-be. "Everyone has a story. This is our story," Laura Meyer said. "We want to help people." The Meyers knew nearly nothing of cleft lip and palate when Blake was born. They want to tell Blake's story to build awareness about orofacial clefts (cleft lip and palate) so parents can know that clefts are a possibility. Orofacial clefts are more prevalent than many people realize, the Meyers said. According to the U.S. Centers for Disease Control and Prevention, orofacial clefts are the most common birth defects in the country, affecting about 6,800 infants annually. Bailey said Carle's cleft team performs 20 to 30 cleft surgeries each year. But the Meyers also have good news: resources are available to help people and your child can recover and lead a normal life. "We love our child," Laura Meyer said. "We wouldn't have done anything differently. But we would have been more educated." Laura, 40, and Tod, 36, have three children: Claire, 7, a first-grader at Grove Elementary School; Parker, 5, who attends Tomorrow's Promise Learning Center; and Blake, 2½. Tod is a systems analyst at State Farm Insurance Cos. and Laura is a homemaker. Laura's pregnancy with Blake was routine and full-term. Three sonograms revealed nothing unusual. On Sept. 25, 2005, Laura went to BroMenn to have Blake. She received an epidural but when his heart rate didn't respond, doctors decided to do an emergency Cesarean section. "When he was born, the room was silent and he wasn't crying. I asked 'What's wrong?'" Laura recalled. Then she saw Blake and asked "What's wrong with his face?" Tod responded, "I think he's got a cleft." Laura said, "You always hope that you will have a perfect baby boy." They knew they had challenges ahead. Blake was transferred to Carle because that Urbana hospital has a neonatal intensive care unit and a cleft team. Blake was breathing on his own but, because of the cleft, he couldn't nurse, so he was given a feeding tube in his right nostril. "That was disappointing," Laura said. "I was able to nurse the other kids." Laura and Tod learned to feed Blake using the Pigeon Feeder. Blake could use that because the special valve was hard on top to offset the missing palate. Blake was discharged after seven days. Back home, the Meyers began learning about orofacial clefts. They learned that sonograms may not be able to detect clefts. They learned that the cause is unknown but heredity and environment contribute to cleft. "The cause is multi-factorial," Bailey said. Laura had a distance cousin with cleft. As for environmental factors, the Meyers didn't know what they could be. When Blake was seven weeks old, Evans did an initial evaluation, focusing on Blake's feeding. "The hole in his palate would not allow a normal sucking pattern," Evans recalled. She worked with the Meyers on continued use of the Pigeon Feeder. At 10 weeks old, on Dec. 14, 2005, when Blake was strong enough to tolerate a general anesthesia, he was back at Carle for Bailey to close his cleft lip and for tubes to be placed in his ears. The tubes were placed because children with cleft palate have a high incidence of ear infection. With his lips closed for the first time, Blake had to learn how to eat and breathe at the same time. Then he became ill and was diagnosed with MRSA (methicillin-resistant Staphylococcus aureus), the antibiotic resistant bacteria that has been sickening an increasing number of people all over the country in the past few years. His ear tubes were removed so the infection could be treated. During the next few months, he went through many kinds of ear drops and oral antibiotics but he kept testing positive for MRSA. The infection also diminished his hearing. In April 2006, the Meyers said the ongoing battle was unacceptable and they took Blake to an infectious diseases specialist at Washington University in St. Louis. The specialist prescribed a strict regimen of bathing Blake with a prescribed body wash and giving him two antibiotics each day. The entire family used a prescribed antibiotic nasal ointment and body wash. "That cleared it up," Tod said. On July 6, 2006, Blake returned to Carle, where Bailey repaired Blake's cleft palate, did additional work on Blake's lip and Dr. Michael Novak placed the third set of ear tubes. The surgery was a success and Blake was infection-free. "After that surgery, we came home and it was a breath of fresh air," Laura said. "He was healthy and he had no ear infections." Since that surgery, Blake has made gradual progress. He has received speech and developmental therapy through Early Intervention Services and the SPICE program. He speaks clearly, eats like a typical 2½-year-old, can count to 15 and is learning his colors and shapes. He is evaluated quarterly for speech and development and is evaluated once a year by the Carle cleft team. "He is doing exceptionally well," Evans said. Laura said Blake's experiences haven't affected his personality. "He's a caring, fun-loving toddler. He's sweet all the time." Blake's next surgery will be at age 9 to 11 when Bailey will do an alveolar bone graft to reconnect the alveolar, which is the bone that holds the teeth. That surgery must wait until Blake's baby teeth fall out. Another surgery, in early adulthood, will be a rhinoplasty to finalize the appearance of Blake's nose to make it more symmetrical. Cleft facts• Orofacial clefts (cleft lip and palate) are the most common birth defect in the United States. • About one in 600 children born in United States has a cleft lip or palate. • A cleft lip is an opening or gap in the skin of the upper lip that extends all the way to the base of the nose. A cleft palate is an opening between the roof of the mouth and the nasal cavity. • Some children have either a cleft lip or a cleft palate and some have both. Clefts may be on one side (unilateral) or on both sides (bilateral). • During normal development of the fetus, tissues forming the lip and palate fuse together. When they don't, a child is born with a cleft. • Doctors don't know why babies develop clefts but it may be a combination of family history and environmental factors (certain drugs, illnesses, and the use of alcohol or tobacco while the mother is pregnant). However, cleft may show itself as an isolated incident. • An interdisciplinary cleft/craniofacial team will provide good care for a child with a cleft. The first lip surgery may be performed at two to three months, the palate may be repaired at eight to 12 months, and ears will be checked because children with clefts are prone to ear infections. Therapy by a speech and language pathologist is likely. SOURCES: U.S. Centers for Disease Control and Prevention, www.cleftadvocate.org , www.kidshealth.org E-mail this story | Print this story | Search archives | RSS Show comments |  Hide comments | Hide comments on all stories |
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