**January is National Birth Defects Prevention Month. Each Friday this month, in honor of those babies, we wanted to use this time to share a few stories from local moms who’ve dealt with these trials and tribulations and provide some great resources and information from local Dallas doctors. Although not all birth defects can be prevented, we hope that through raising awareness, steps can be taken to help prevent them.**
My special little guy, Christian, knows how to make others smile, but was physically unable to smile himself. That was until recently, when he underwent facial reanimation surgery at Seattle Children’s Hospital.
Christian was born with CHARGE syndrome, a rare genetic anomaly that affects one in 8,000-10,000 people. Each person has a unique set of complications, however most individuals with CHARGE syndrome have some level of cranial nerve dysfunction.
In Christian’s case, he has hearing loss in both ears and is blind in his left eye. We knew about his hearing and vision loss within the first six weeks of life, but didn’t recognize his bilateral facial paralysis until he was four months old.
I remember asking the doctor why Christian was not smiling and I will never forget her response to me. It was one of the hardest moments in my life. She told me, “He sticks his tongue out a lot, but he probably won’t ever smile and he may never do anything.”
As I held Christian, I looked into his eyes and started to block out the rest of what she said. I focused in on him and knew that was not true. I knew this wasn’t the end of his story. While searching for answers, I found other parents of children with CHARGE syndrome who helped me realize that Christian wasn’t smiling because he couldn’t smile— but because he had bilateral facial paralysis. There were many things we were told Christian may never do—doctors said he may never walk, or talk, or eat by mouth. I was coming to terms with those possibilities, but my heart deeply longed for him to be able to smile.
Before he was one year old, I found the pioneer of the SMILE Surgery, Dr. Ronald Zuker, who recommended a doctor in Houston. We started seeing the doctor when Christian was 13 months old, but knew he wouldn’t be able to have the surgery until he was about nine.
During the time we were waiting, Christian started showing a desire to smile. He would hold the corners of his mouth up for pictures. He wasn’t able to convey in sign language his deep emotional yearning, but his body language was clear. From then on he would ask me about it, assuming it was as simple as a doctor’s appointment. I was so thrilled that my heart’s desire for him was something he longed for too. My son expected a smile and so did we.
I had the chance to talk to Dr. Craig Birgfeld at Seattle Children’s Hospital on the phone and through email. We then decided to go to Seattle and have him meet Christian to see if we could work together to give him a smile.
We met with the two Seattle Children’s facial reanimation surgeons, Dr. Birgfeld and Dr. Peter Neligan, in November of 2012. They worked closely with our family to formulate a plan that made the most sense for us. We decided an anterior shoulder muscle would be used to connect the facial nerves with the muscles in Christian’s face.
In June 2013 we returned to Seattle, cautiously optimistic.
Christian had been eagerly counting down the days and, luckily, his surgery went off without any complications. We returned home and waited for movement of his new smile muscle. It was a long wait, but 12 weeks after surgery, Christian’s smile “woke up.” I will never forget that morning.
I heard Christian running into my room laughing louder than I had ever heard. He was signing, “Look, Mom, my smile woke up!” I proceeded to scream with joy and held my little guy tight, with tears running down my face. That tiny bit of movement was so long awaited and touched the depths of my heart beyond explanation. We were on cloud nine for weeks. We videotaped his smile as it progressed and got stronger so we could show our doctors, family and friends. Christian is so proud of his smile and shows it to everyone—even people he meets at the grocery store!
Now that he has movement on one side, we could move forward with surgery on his right side of his face.
In December 2013, Christian had another successful surgery and recovery at Seattle Children’s Hospital. We are anxiously awaiting movement of that muscle and are hoping he gets his full smile just in time for his 12th birthday in April.
There are no words to express how grateful we are to Seattle Children’s Hospital, especially Dr. Birgfeld and Dr. Neligan, for giving Christian the priceless gift of a smile. Christian does an amazing job of expressing himself through his body language and use of sign for communication. His new smile won’t change any of that—it will only enhance it.
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Molly Roberts is wife to Derrell and mom to four wonderfully busy children. She is pursuing a degree in Speech Language Pathology and works as a massage therapist. She has a heart for foster care and state adoption. In all her spare time she loves traveling and spending time with friends.
Molly is very involved in the CHARGE syndrome community, including being on the board of Texas Chargers, an organization that provides support and educates individuals and families living with CHARGE syndrome.