From Misinformation to Education

From Misinformation to Education

Terra and Brent had been happily anticipating the birth of their first child. Learning that their son, James, would be born with a cleft lip and palate stopped them in their tracks. “I remember thinking, I’m finally pregnant, and now there’s a problem,” Terra told me. “But now, I can see—it wasn’t a problem, because we weren’t alone.”

Lancaster Cleft Palate Clinic has been helping parents like Terra and Brent build happy, healthy futures for their children for over 81 years. But the journey isn’t always easy or fast.

James was born prematurely at 34 weeks following a Life Flight helicopter ride for his mother. In addition to the cleft lip and palate, James was born with additional anomalies especially related to feeding and swallowing. James’ first two years of life have included over 10 surgeries and procedures.

“When we found out about the cleft, we started researching online and saw so much inaccurate, scary stuff. But that first trip to the Clinic showed us what an awesome resource the team is to understand cleft lip and palate,” Terra recalls.

This isn’t the first time we’ve seen the way misinformation on the internet has impacted a family, so our team always has recommendations for a few trusted sites and assures parents to block out anything else the web has to say. Education is a critical part of our process as we walk families towards a healthier future.

“The clinic is amazing support system for anybody going through cleft-related surgery,” she continues. James has had the cleft of his lip and palate repaired, and may require revisions at a later age.

“As with most children in our clinic,” explains Dr. Rusty Long, the Clinic’s Director Emeritus, “James also has some hearing issues which are being managed, and he is still being treated for feeding issues related to his abnormal throat anatomy. While a feeding tube helped with his nutritional needs, we will continue to follow his dental development and speech progress as he ages.”

Despite his journey, James is two years old now, an outgoing boy who loves Paw Patrol and his three pets. He uses almost 40 words and is recovering speedily from his delays due to prematurity. Abbie Ellis, one of the Clinic’s feeding specialists, says that James has “the best little personality, what a jokester!” She notes that his memorable belly laugh rings through the Clinic whenever his family is here, evidencing that this feels like a safe place for him.

His mom Terra says, “One thing I didn’t understand until after his lip surgery was something someone on the team had said: that I should be prepared to fall in love all over again. Brent and I were so worried about his facial features and looks changing, because all we had known and loved was the way he looked with his cleft! But we could see right away, James is still James. He’s just James with his lip fixed now! And we did fall in love with him all over again.”

Brent’s hope for his son James’ future is “for him to live a healthy and happy life.” The family plans to continue driving the two-hour distance to our Clinic for James’ future pediatric dentistry and orthodontic needs because they’ve found that very few healthcare providers have a good understanding of cleft needs, even as it relates to the rest of his general medical care.

Terra believes that the greatest gift of the clinic’s care is the knowledge that you aren’t alone.