ACPA Family Services

Cleft-Craniofacial Community Stories

The Kauffman Family

By Leslie and Arlin Kauffman

May 3, 2001, was a day of mixed emotions for us. After three miscarriages and months of medical tests, we found out that Leslie was pregnant again. We didn’t know whether to be happy or nervous. Would this be another case of, “Here we go again. What will go wrong this time?”

Given Leslie’s pregnancy history, her doctors recommended frequent ultrasounds to monitor the baby. We had an ultrasound every two weeks during the first trimester. Everything was going as planned—finally! On August 1, Leslie was scheduled for a level-two ultrasound to more closely check the baby’s condition. It started out like any other ultrasound—the baby’s weight and measurements were estimated and looked to be right on track. We had also decided to find out the sex of the baby at this ultrasound. “It’s a girl!” How exciting!

After the technician finished the ultrasound, she went to get the high-risk obstetrician on duty at the hospital, who introduced himself and began to do another ultrasound on Leslie. Once he finished, the first words out of his mouth were, “I’ve got some news for you, and it isn’t good.” Before we could even think, he told us that our baby daughter had what appeared to be a cleft lip on the left side. He also mentioned that the baby might have other anomalies that could possibly indicate Down Syndrome or another genetic condition. He told us to call our OB/Gyn for more information and sent us on our way. We were in shock. “What is a cleft lip?” We had waited so long for this baby. How could this be happening?

We went home and began combing the Internet for more information…a cleft means the lip didn’t form properly during the early weeks of gestation, often requires special bottles, can be repaired by surgery, can also affect the palate…our heads were spinning. Leslie then found the Cleft Palate Foundation’s web site and called the hotline. She spoke with someone who was very helpful in providing information about cleft lip and palate and answering our questions. They talked for almost an hour, and within days we received a packet of informational literature from CPF. We were still very scared about what the future held for us and our baby, but we felt we could deal with the situation proactively now that we were more educated on the condition. We vowed to not let our uncertainties ruin our joy during the happiest moments of our life.

On January 17, 2002, Katelyn Anne Kauffman arrived. She was born with a bilateral cleft lip and palate. We used the Haberman bottle for her feedings, and with a little practice she was eating well. During her first year, Katie had four surgeries—PE tubes put in her ears at two months, a Latham appliance attached to the roof of her mouth to straighten her nasal septum and protruding premaxilla on her three-month birthday, lip repair surgery at 4½ months, and her palate repaired at 9½ months. Katie came through all her surgeries like a trooper—she is a fighter who doesn’t let much get her down.

Though the doctor’s prediction that Katie might be born with Down Syndrome proved untrue, Katie does have a few other congenital problems that were discovered through countless tests during the first few months after her birth. Katie was born with severe to profound hearing loss in both ears and limited vision in her left eye. She wears a hearing aid on her left ear and was recently approved for a cochlear implant. We pray that the implant will be a success and that her hearing will improve. This summer, Katie will begin part-time at a local school that specializes in teaching children with hearing loss how to listen and speak. It is an amazing program with caring, dedicated instructors who are teaching many inspiring children how to talk. We are blessed to have it in our area. Recently, we had Katie’s eyes retested, and it looks like she may benefit from glasses on both her right and left eyes in a few years. Though the vision in her left eye can never be totally corrected, this is a much more promising diagnosis than we received a year ago. Katie’s motor skills are delayed due to her other medical conditions and the multiple surgeries she needed during her first year.

She has been going to physical therapy since October 2002, and it has helped her tremendously. She started sitting up on her own a couple weeks after her first birthday, and she can now stand with some assistance. Before you know it, she will be running around here, terrorizing our dogs and exhausting her parents!

Despite all she’s been through, Katie is a joy to be around. She always wakes up in a good mood, and loves to smile and giggle. One of her favorite games is peek-a-boo. She also likes to sit on the floor at her little lap table and play with her Winnie the Pooh alphabet cards and wooden blocks. Katie loves to watch the Disney Channel—her favorite shows are “Bear in the Big Blue House” and “The Wiggles”—and her Talking Hands sign language video. She also loves to look at books before bedtime.

We believe in taking it one day at a time with Katie. Each day, we try to relish the things that she has accomplished and we encourage her to keep growing and developing her skills. We hope that Katie enjoys the years ahead as much as we enjoy having her in our lives.

Last Updated: Jul 24, 2006