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Craniofacial Defects[Part_2]

Two of the more common birth defects are cleft lip and cleft palate. In this segment of a Sense of Community, Michele Skalicky talks with Dr. Ro Meystrik, a plastic surgeon at St. John's Clinic, about craniofacial defects and how they're treated. We also hear from Angelia Ham, a mom of two boys who were born with clefts and who has organized a local support network for parents of children who are born with clefts.

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12 years ago, Angelia Ham and her husband, Eric, were eagerly awaiting the birth of their first child. It had been an uneventful pregnancy, and they didn't have any reason to suspect that there might be something wrong.

Angelia remembers clearly the looks on family members' faces. She says each reflected the heartbreak and confusion she felt in that moment.

Being unfamiliar with clefts and new at parenting, the Hams wondered if other things could be wrong with their son, Kenny. However, those fears were quickly put to rest. They learned that a series of surgeries could correct his birth defects.

At 6 weeks, Kenny had his lip repaired and at 10 months, surgery fixed his palate. At 4, he had a fistula that had opened up after the 2nd surgery fixed and had a slight revision of his nostril where the cleft was. At the same time he had tubes put in his ears since kids with clefts are prone to ear infections. 3 years ago, surgeons did a bone graft where the cleft is on the gum line.

Today, he's a handsome 12-year-old who serves as a role model for other kids with clefts.

Perhaps what helped the Hams most thru the difficult early years was talking with other parents who had been thru the same thing.

As Kenny grew and changed, the Hams pulled away from their support network. But when Angelia was pregnant with their 3rd child (they had a girl Kia two years earlier) an ultrasound showed that Elijah would be born with clefts, too.

Ham learned about Cleft Advocate, a program of AboutFaceUSA, by going online. It provides a variety of information for parents of kids with clefts.

She and Kenny traveled to Las Vegas for a Cleft Advocate conference. While there, she attended a Pathfinder workshop, which explained things an individual can do in their area to help support families.

That motivated her to return home and put together a support network called Show-Me Smiles, a branch of Cleft Advocate.

Ham works with another mom coordinating activities and event for parents and their children who were born with clefts.

She and others in the support network work to make sure no parent leaves the hospital not knowing how to feed their child with a cleft and not knowing where to turn for help.

Parents who would like to find out more about Show Me Smiles can go to www.showmesmiles.org or call Ham at 890-9058.

Ham hopes that, by offering the support network, they can make a difference.

Like Angelia's son, Kenny, Elijah is doing well, too. He's had his lip and palate repaired. Their only concern at the moment is speech—he's going thru speech therapy to make sure his speech develops as it should.

You can view photos of Kenny and Elijah at ksmu.org and find a link to Cleft Advocate.

This program is also available on the web at ksmu.org.

For KSMU News, I'm Michele Skalicky.

Links:

  • Cleft Advocate