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Cleft-Craniofacial Community Stories

Casen’s Story

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CPF’s September 2010 Story of the Month, Casen James
Casen, one week old

My husband and I were anxious to know the gender of our new baby. I was hoping for a boy and my husband was just holding his breath hoping. Although Charles assured me he did not care what gender of the baby was, he just did not want me to get my hopes up. I made sure the camera was in hand and we were off to the see our baby. Yes, it was a boy! I was elated, but moments later the doctor pulled Charles and me into a room. I never suspected anything other than the basic news because I have three children at home. However, he went on to say our baby had a unilateral cleft lip, possibly a cleft palate, and some kidney issues. Wow! I was blown away, not so much by the cleft lip, but by hearing all of the news as once. I was rushed in for amniocentesis. I agreed to it because I wanted to know what I had to face with having three children at home. The results came back, and Casen was fine. The kidney diagnosis was fused kidneys, but the cleft lip remained true.

I knew of cleft lip because some of my students had the scar from the lip repair. In addition I knew cleft lip was rare in the African American community. I silently pondered the question: why us? My husband actually asked this question aloud once we were home. With tears in my eyes, I answered, “Why not us?” I searched the internet in hopes of educating my family and myself. I found Cleftline.org – it was the beginning of a great journey. I read so many Stories of the Month and really held on to what parents said and the advice they gave.

CPF’s September 2010 Story of the Month, Casen James
Three days old

Through the Cleft Palate Foundation, I found a craniofacial team that answered all my questions prenatally. The team and surgeon were always an email or call away. This built so much confidence in my ability to take care of Casen. The team met with my husband, son, and me to go over feeding techniques and answer questions. The St. Joseph’s Craniofacial team knew how nervous we were and how prepared we wanted to be, so they paired us up with another couple who had a baby born with unilateral cleft lip. This couple was a blessing! They shared everything about feeding, surgery expectations, and more.

Casen was born October 12, 2009 and had surgery in January of 2010 to repair his lip. Dr. Ricalde did an awesome job! I was relieved that we had crossed that hurdle. However, two months later, Casen had open heart surgery to repair a VSD and ASD. Once again, the St. Joseph’s Hospital did a great job.

CPF’s September 2010 Story of the Month, Casen James
Casen at six months

Looking back on this journey, I worried for absolutely nothing. I advise all parents to find support, pray, and prepare. I have met so many wonderful people. Casen is so beautiful! All he has are remnants of this journey: a tiny lip scar that I love so much and a tiny chest scar that reminds me how blessed we are. At nine months, Casen is a thriving little boy. He enjoys playing with his siblings and crawling around the house. I am so encouraged by his courage and I cannot wait to share this story with him. My husband, family, friends, and the Cleft Palate Foundation made Casen’s journey glorious. Looking back, I know why we were chosen: I believe Casen’s journey will be a testimony to others just like the many stories that were testimonies to us. It is not everyday that your baby gives hope and encouragement to others, but God knew Casen’s parents would be up for the task. I truly feel that when God gives us a task he also gives us angels to help along the way. I hope Casen James’ story inspires and encourages parents who are facing the same situation.

If you have questions, feel free to email me, Kenyetta Feacher at kjf01@verizon.net.

Last Updated: Sep 2, 2010