Owyn is One in a Million

Everything has a place in God’s plan. That’s the belief system Matt and Tiffany have modeled for their family, including when their daughter was born with a rare syndrome that annually affects less than one in a million children worldwide.

When Owyn was born, everything appeared completely normal. However, when the nurse put Matt and Tiffany’s tiny baby on the cold scale to be weighed, her left hand opened. It unclenched. The nurse instantly recognized something unique: Owyn was born with four extra fingers on her left hand but was missing a thumb.

“It’s a lot to comprehend in the moment. At that point, we’d already parented three other children. So, when out of left field, you’re thrown this curveball: ‘Here’s an abnormality.’ It’s very rare so it even took a while to get diagnosed,” said Matt.

A diagnosis of ulnar dimelia, or mirror hands, finally came once Owyn was referred to Shriners Children’s St. Louis and Charles Goldfarb, M.D. After an initial assessment, Goldfarb set out a simple goal: to make the hand as functional as possible.

As parents, they had to let go of what they expected to be “normal” for Owyn.

“Out of eight fingers, she wasn’t going to have four fingers and a thumb. Dr. Goldfarb walked us through valuing functionality over beauty,” remembered Matt.

“One challenge with the birth of any child with a congenital difference is the concept of the loss of the ‘perfect’ child. We all want our children to be perfect. Families have to come to grips with this and our counseling is only a small part of this process. Of course, with time, we all realize that function is the most important requirement. Conversations get easier with time, especially as families realize that their child is going to do well,” explained Goldfarb.