The Courage to Smile
Facing the Challenges of Cleft Lip and Palate
Craig and Christine Runge were shocked after being told their unborn daughter, Michaela, would be born with cleft lip and palate. Parents often experience a variety of emotions when they first learn about the condition.
Paul Rottler, MD, FACS, Anthony Sudekum, MD, FACS Gregory Rinehart, MD, and an entire team of additional professionals reviewed the Runge family case and offered their expertise and support.
"There are many reactions parents have when they first hear the diagnosis that their child has a cleft lip and palate. Disappointment, fear and confusion are often followed by a protectiveness felt toward the new baby," said Rottler, Director of St. Luke's Cleft Palate Team.
One out of every 700 births results in a cleft lip or palate. Many of these occur in families in which there is no history of clefts. While it is known how cleft deformities occur, it is seldom known why.
"A cleft palate is an abnormal separation of the central and lateral part of the palate, or the tissue which forms the roof of the mouth," explained Reinhart, a plastic surgeon on Michaela's team.
Craig and Christine learned about Michaela's condition when Christine was six months pregnant. St. Luke's Cleft Palate Team conducted a prenatal visit with the Runge's to discuss the condition. After consulting other cleft palate teams about Michaela's condition, the Runge family chose St. Luke's.
Christine recommended that other families choose a dedicated team as early as possible. "This allowed us to be prepared and focus on Michaela after her birth, without worrying about how to take care of her," explained Christine.
"Some of the challenges which may accompany a cleft lip and palate are feeding difficulties in newborns, dental and orthodontic disorders, ear infections, hearing disabilities and difficulties in speech. Each of these problems can be remedied through treatment. Parents sometimes experience bonding issues which can be discussed further," said Rottler.
"Cleft deformity impacts a child psychologically, emotionally and developmentally," added Sudekum, a plastic surgeon who also reviewed Michaela's needs. "By having an entire team of professionals evaluate the needs of each patient, we are able to help find answers to the varied issues that surround the condition."
"With Michaela, our team focused on recreating normal muscle orientation, which is critical to developing normal speech function," reported Rottler.
Selected members of St. Luke's Cleft Palate Team met with Craig and Christine the day Michaela was born, reviewing her condition and consulting the parents about what to expect when they took Michaela home.
In one visit, a team of professionals examine the patient, their specific needs are discussed and a plan of coordinated care is developed. St. Luke's Cleft Palate Team includes board-certified plastic surgeons, dental specialists, an audiologist, a speech pathologist, an otolaryngologist, an occupational therapist, a pediatrician, genetic counselor and a nursing coordinator.
St. Luke's Cleft Palate Team emphasized early treatment to help the Runge family and Michaela. Team members examined Michaela at regular intervals to assess her progress. Based on her condition, Michaela was scheduled to receive surgery once she reached a weight of 10 pounds. The first surgery conducted in cleft lip and palate is lip repair which patients receive at approximately three months, or a weight of 10 pounds. Palate repair generally is scheduled when patients are one year old.
Although both of Michaela's parents were surprised by her condition, they still loved the way Michaela looked. The first surgery performed by Rottler, when Michaela was only eleven weeks old, was especially difficult for Craig.
"Looking at her last smile before surgery, I thought she was beautiful. I did not want to change a thing; I had trouble imagining her being different, even though she had a noticeable deformity. After the surgery, she looked like a new baby. We loved her then and we love her now," said Craig, a genuinely proud parent. He has embraced the transformation in his daughter, reflecting the positive changes in her appearance and condition.
"We realized the importance of treating her. She would face many difficulties as she grew older if we did not work to fix the condition. The surgery was for the good. It has worked out perfectly and we would not change anything," said Craig.
The Runge family has received strength from each other and their faith during the surgeries, and acknowledges that the experience has drawn them closer to each other.
Craig also encouraged anyone who is going through a similar situation to consult other families who have experienced this condition. This allows the family to discuss what to expect during surgery and the benefits of the procedures.
Michaela is currently in excellent condition. St. Luke's Cleft Palate Team reports her progress to be exceptional.