Paula Miller remembers feeling surprised in 2000, when she found out she was having twins. When she found out one of her sons had a cleft lip and cleft palate, she said, she felt blindsided.
"Even though my husband and I are educated, we didn’t know anything about cleft lip-cleft palate. We didn’t know what it was going to mean for the future of our child," said the Fairfax resident.
Cleft lip-cleft palate, when the two halves of the palate or lip do not fuse together, is correctable with surgery, and according to the Centers for Disease Control and Prevention (CDC), the condition occurs in 1 of 700 children. Even so, said Miller, she did not know what to do. For children like Michael Miller who have a cleft lip or cleft palate, breast-feeding is a challenge, she said, and since many surgeries take place before the child is a year old, taking care of a baby post-surgery can also be difficult. But more than anything, said Miller, she wanted someone who understood what she was going through.
"When I found out my son was going to be born with cleft lip-cleft palate, I wanted to know if somebody in my neighborhood was going through it," she said.
Miller got together with a few local women who had shared her experience, and before long, the group expanded to 25 people. It is now a nonprofit organization, Virginia Smiles, Inc., which today includes over 800 people across the state. Virginia Smiles provides information about cleft lip-cleft palate to families and health care providers, said Miller, and connects families of children with cleft lip-cleft palate with supplies and resources.
THE MOST important mission of Virginia Smiles, however, is the parent-to-parent contact, she said.
"Most of what I’ve learned about raising kids is through talking to other parents," said Miller, who has four sons including Michael and his twin brother Matthew, both now 5.
"If I have a 10-month-old baby and he’s just gone through his second surgery, it’s 3 a.m. and he’s having trouble feeding, who can I call?" said Debbie Oliver of Las Vegas, who founded the nationwide cleft lip-cleft palate support group cleftAdvocate. Through an organization like Virginia Smiles or cleftAdvocate, a parent can connect to someone else either online or over the telephone and ask that question, said Oliver.
Miller is also a member of cleftAdvocate, with a role similar that of Virginia Smiles: if someone whose child has cleft lip-cleft palate from the Northern Virginia area contacts Oliver, she sends that person to Miller.
"We're here to bridge the gap between medical professionals and the family," said Oliver. Another part of the Virginia Smiles and cleftAdvocate mission is educating doctors and nurses about cleft lip-cleft palate from a parent's point of view. For Miller, that means going to hospitals and giving presentations to the delivery wing staff.
"Many birthing hospitals are not knowledgeable about cleft palate," said Oliver.
New member Laura Bachmann of Burke was introduced to Virginia Smiles by a friend. Even though she learned about 8-month-old son Dylan’s cleft lip and cleft palate relatively early in her pregnancy, she still remembers feeling paralyzed, afraid she would not be able to take care of his needs. But when she arrived at Miller’s house, she said, Miller pulled out a wealth of supplies, from post-surgery arm restraints to special feeding bottles.
"It felt good just to know that there was a group of parents who had already been down the road we were going and was totally willing to share their experience for what worked and what didn’t," said Bachmann.
Children with cleft lip-cleft palate take on challenges as they grow up, said Miller, since surgeries continue as the child’s face develops. Different craniofacial teams in the Washington D.C. area use different techniques to repair the cleft lip and palate, she said, from surgery as soon as the child is born to a orthodontic molding plate that closes the palate together.
"People will say, ‘Oh, I thought he was all done,’" said Miller. Michael’s latest surgery, over the summer, adjusted his palate and gave him the ability to speak so that other children could understand him. As he grows up, Michael may need orthodontic and jaw surgery, as well as more lip and nose repair, she said.
Often, too, children with cleft lip-cleft palate have to deal with questions — and sometimes taunts — from their peers.
"Children get teased for everything, and children with cleft lip-cleft palate are an easy target," said Miller. One Virginia Smiles member has a master’s degree in social work, said Miller, and coaches parents to prepare their children for school and possible comments. The seminar armed parents and children with age-appropriate responses to questions.
"We teach [Michael] to say, ‘Yeah, I work hard on my speech, what do you work hard at?’" said Miller. "You can cover your child with shame, but the only person who that’s hurting is the child." In dealing with multiple surgeries and social challenges, she said, Michael has become a stronger person.
"He would jump off the roof, if he could," she said. "He has no fear."