03/25/04

WADSWORTH _ When her son Jared was born in 1992, Melissa House had no idea what would happen next. Surgery, feeding problems and more faced this Wadsworth family. House felt they had nowhere to turn for information and advice.

Jared was born with a unilateral cleft lip, alveolar ridge and a bilateral cleft of the hard and soft palates, House said. Cleft lip or palate is the fourth-most-common birth defect, according to the Cleft Palate Foundation, affecting one in every 700 births in the U. S. each year. The condition can include anomalies affecting eating, breathing, hearing and speech.

Doctors can tell you the technical information, but families get to the heart of it all ... the human side. She noted that when her son was born, online support networks were virtually non-existent. Jared is now 11 years old and is a fifth-grade student at Central Intermediate School in Wadsworth.

This month, the Cleft Palate Foundation, Cleft Advocate and AboutFace United States of America co-sponsored the Connections Parent/Patient Conference in Chicago March 20. Additionally, Cleft Advocate conducted their Pathfinder Outreach Workshop March 21 at Shriner's Hospital in Chicago.

I learned about the conference through my friends at the Family-to-Family Connection, said House, referring to the online support network sponsored by Cleft Advocate.

This was a chance to talk openly, ask questions, share and learn in person.

Jared sees the cleft and craniofacial team at Akron Children's Hospital. He has had about a dozen surgeries and anticipates more until about the age of 21 when craniofacial growth stops.

There is so much information on the Cleft Advocate Web site on how to fight for your child's rights to insurance coverage, respect and fair treatment and how to network with others to make sure no family feels they are having to learn it go through it all alone.

House regularly posts at the Family-to-Family Connection, answering questions for new parents.

I vowed I would someday make a difference to other parents, and now I have that opportunity through this organization being a volunteer Pathfinder, she said.

Jared participated in the Blessings in Disguise panel, speaking to families about his own experiences growing up with a cleft. His mother is very proud of him and knows that by sharing his story, her son will be helping parents understand what their children are going through.

For information on the Connections Conference, the Pathfinder workshop and the Family-to-Family Connection support network, contact Cleft advocate at www.cleftadvocate.org. You can reach Debbie Oliver, executive director, at Debbie@cleftadvocate.org, or by calling (702) 769-9264.