A kiss from their sister: A family’s journey with cleft lip care

Published by: Boston Children’s Hospital
Written by: Katie Paradis

Kelly and Ben’s experience with cleft lip care at Boston Children’s Hospital spans multiple years and multiple children.

Two of their daughters, Molly and Annie — five years apart in age — were born with an incomplete unilateral cleft lip. The couple won’t shy from admitting that receiving the diagnosis doesn’t get easier.

“It’s a roller coaster of emotions,” Ben says.

cleft lip or palate is the most common congenital craniofacial difference in the world. Yet, in the United States, the odds of having a child born with a cleft lip (without a cleft palate present) are about 1 in 2,800.

“I just couldn’t believe we fell into that small percentage,” Kelly says.

cleft lip is a visible separation in the skin of the top lip. The space can be small or it can be a significant opening that extends from the base of the nose to the top jaw and gums.

.Kelly and Ben had lost their first child, Lucy, at birth in 2014. Therefore, as a precautionary measure, Kelly’s pregnancy with Annie in 2015 was closely monitored by her maternal-fetal medicine team. Despite extensive prenatal care that included multiple ultrasounds, Annie’s cleft was not detected before her birth.

“After losing Lucy, we were anxious throughout the pregnancy with Annie,” says Ben. “And then we were hit with the surprise of her cleft lip when she was born. Click here to read of the rest of the story.

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