Challenges, Hope and Triumph – The Story of Dylan’s Smile
During a routine prenatal ultrasound, Daphne and Chris Christensen, from Norwalk Iowa, were told that their unborn child had a bi-lateral cleft lip and palate, a birth defect of the nose, lip and palate (roof of his mouth). Having a perfectly healthy son born 2 years earlier, this was obviously a shock. The rate of infants born with a cleft lip and/or palate in the United States, is about 1 in every 600 births, according to the Cleft Palate Foundation. This makes the cleft the most common birth defect in the USA. The cause is believed to include both genetic and environmental factors.
The Christensens’ story runs the gamut of every emotion imaginable – sadness, fear, guilt, hope, triumph and pure joy. Below is an interview with Daphne that will give you great insight into their son, Dylan’s story including the creation of Dylan’s Smile, the extraordinary charitable organization that Daphne and Chris started to help other families who face similar challenges.
Smart Poodle Interview with Daphne Christensen
Mom and Founder of Dylan’s Smile
What did you and your husband do to prepare for Dylan’s birth once you were informed about his cleft lip and palate?
I was 19 weeks pregnant when we first learned of Dylan’s cleft lip. At that time we thought it was just one side of the lip. Toward the end of my pregnancy, it was confirmed that it was both sides of his lip (bilateral cleft lip, one side complete and one side incomplete. Complete means the cleft went all the way up into his nose.) We also got a view on ultrasound that showed the cleft palate – many times this isn’t diagnosed until delivery.
Not many people know, but at the same time Dylan’s cleft was discovered there was also concern that he would be born with a fatal kidney disease. Distracted by this possibility, the cleft diagnosis was the least of our concerns. When Dylan was born, he did NOT have a kidney disease! At that point, a cleft lip and palate seemed so very minor in comparison.
Before Dylan, did you know anyone who had this type of birth defect?
Yes, I had a friend who had a baby just months before who had an incomplete cleft lip. Other than that, I had to think back to my childhood to a boy I knew who had cleft lip.
Other than the baby’s doctors where did you go for support after your son was born?
The Internet. I think that freaked me out more. Actually, I became really withdrawn during the second half of my pregnancy; it’s like I went into “protect mode” before Dylan was even born. I was busy preparing myself emotionally and being strong for my family. I never felt pity or asked “Why me?” I was and always will be very proud to be the mother of a child with a birth defect. My husband and I were ready to accept whatever challenges came our way.
How old was your older son when Dylan was born, and did he understand the situation with his baby brother?
Tucker was a dream big brother (he was two years old when Dylan was born). He never even realized anything was different about Dylan! When people would comment or ask about Dylan’s mouth and nose and the special mouthpiece he wore, Tucker would seem confused by the questions and curiosity. In fact, after Dylan’s first surgery he no longer had to wear his special mouthpiece. Tucker was terribly worried about where it was and when we would be putting it back in!
Did you experience strangers staring at your son, asking questions or making comments? And how did you handle this?
It broke our hearts to have people stare. I was so thankful for the people who were polite and brave enough to ask a question, and genuinely wanted to learn about Dylan’s condition. I’ll never forget the incredible sadness I felt when a volunteer from the hospital brought flowers into my room shortly after Dylan was born. On her way to his bassinet she asked if she could see my baby. I could tell from the look on her face, that she was startled and before I could even respond, she hurried out of the room.
My mom (Grandma Mary) and I took Tucker and Dylan to the Iowa State Fair the summer Dylan was born. He was only a couple of months old. An elderly woman came bolting from the crowded sidewalk, peered into the stroller and proclaimed “that baby’s got a hair lip!” I was mortified. Most people don’t know the old wives tale about a “hare lip” (it’s a very degrading, ill-used term); it has nothing to do with “a scar, thin like a strand of hair.” Rather it’s centered around a belief of pregnancy cursed by a black rabbit, or hare.
For the most part, people are very kind and good-hearted. I appreciate questions and being able to educate people. These few isolated incidents were hurtful and remain fresh in my heart. These examples demonstrate why our work through Dylan’s Smile is so important.
How many surgeries (and what type) did Dylan have to correct his cleft lip and palate?
Dylan has had three major surgeries to repair his lip, nose and palate. He has had several other minor procedures to correct issues with his ears (ear tubes, for example).
What physical challenges do children with facial birth defects like this experience?
Many times children born with cleft lip and palate have speech problems. Many children NOT born with a cleft lip or palate also have speech problems, so this has been easy for us to accept. Thankfully Dylan’s speech is wonderful – in fact, ahead of his age. Other issues can include trouble eating (milk and food can come up through the nose, or babies can intake too much air making their tummies uncomfortable), failure to thrive because of the troubles eating and other issues that vary depending on the severity of the condition and other syndromes that may be involved. Cleft lip and palate on their own are a blessing, in my eyes. Often times a cleft found in utero is the sign of much bigger problems.
I cannot imagine what that must have been like waiting for Dylan to come out of surgery each time. What was the recovery like for him?
The waiting was angst-filled, no doubt. However, we were in the hands of a very capable, skilled medical team. Recovery for Dylan was very smooth. I think I was more anxious about the process than he ever was. He had to wear arm restraints to keep his elbows from bending – the goal was to keep toys and fingers out of his mouth, away from his fresh surgical site. We had
to modify his feeding methods (using a syringe v. a bottle). All of these aspects were very manageable, and Dylan very easy-going.
Can you tell us about your organization, Dylan’s Smile? And how and when did you come up with the idea?
Dylan’s Smile is somewhat of a selfish endeavor for me. It provides an outlet for the energy, compassion and love I feel for children undergoing similar treatment paths as Dylan. I love to provide families with a glimmer of hope and children with a little extra comfort. Our main program of Dylan’s Smile is called “Beary Brave.” We raise money to give Gund(r) teddy bears to children as they prepare for their first surgery. I knew before Dylan was born that I would do something with this experience as a parent and the emotions that surround it.
Is this what you do full time?
By day, I am a fulltime marketing professional in the medical field. I work on efforts for Dylan’s Smile in the evenings and on the weekends, primarily.
Is it true that you won a guitar from the rock band Kiss? Do tell us about it!
As a member of the American Marketing Association, I am afforded many fabulous opportunities for professional growth and development. I never knew how much one meeting in particular would mean for me and the organization (Dylan’s Smile) that was once just a dream. In March of 2007, I attended a lunch meeting where the speaker was raffling off an electric guitar signed by Paul Stanley of KISS. I won the guitar! I knew I wouldn’t have a need for the guitar, and my wheels started turning immediately. After lunch, I thanked the speaker and asked him if it would be ok if I conducted an eBay auction to raise money for the start-up fees for a nonprofit organization. Our local newspaper picked up the story and the rest is history! The guitar sold, and we were able to build our momentum from that point. Later I even learned that Paul Stanley was born with a facial defect. Talk about a coincidence.
What have you accomplished so far through Dylan’s Smile?
When I think about accomplishments, several smiles and family testimonials come to mind. Success for our organization means one more family has learned they are not alone. Through Beary Brave, our teddy bear program, we have touched many children and their families and “wrapped our arms around them.” even from miles – and countries – away.
What are your goals for the future of your organization?
Someday, I would like to have a scholarship program through Dylan’s Smile and be able to offer financial support for children and youth (from elementary to middle to high school) to help realize a special dream of his or hers – whether it is to participate in a summer sports program, music or art camp, whatever it is that builds on a dream or potential talent.
For now we maintain our vision of making the surgery process a little less scary.
What can others do who want to help your cause?
We are so grateful for those who share their resources! Monetary donations may be made through our secure website at www.dylanssmile.com. For more information on giving, please email email@example.com. Thank you! We are also grateful for donations of new children’s books, games or puzzles (for various ages) which help the recovery process!
I have seen the photos of Dylan now on your website. He is a beautiful boy! How is he doing?
Dylan is a normal little boy. He does everything that other kids his age do and fortunately has not faced ongoing challenges with eating, growing, speech or any other developmental factor. Time will tell how his teeth and mouth continue to develop. After orthodontics, the next phase of surgical treatments will be discussed. More than likely, he will need bone grafting to modify his gum line. He is four now, and more curious about his surgeries as a baby and not at all shy to show people the two scars that form an inverted “V”from his nose to his top lip.
Looking back on your entire experience, how would you sum it all up?
Truly, it’s been an amazing adventure full of love, humility and grace. So many families are dealing with illness or disease or a defect that is beyond surgical repair. Our hearts go to them as we work to – at the very least – raise awareness of birth defects of the skull and face.
What advice would you give to a couple who has just found out their unborn or newborn baby has a cleft birth defect?
Surround yourself with knowledge, and try not to let the worry and anxiety of this day cast a shadow over tomorrow. Each phase in the journey is temporary. Whatever challenges are in the present won’t last forever. In the back of my mind I hear the words, “Lucky me, my heart is full!”
Thank you, Daphne, for telling us your incredible story. It mustn’t be easy to recount those challenging years. Your generosity in sharing Dylan’s life with others is sure to help so many other parents who experience similar situations. You have shown us that there is always hope and help, and that happy endings are not just for story books!