Charlotte, beautiful cleft lip & all

Every one has a story.  A story that is worth sharing, a story that forever changes their life, heart, and perspective.

My long time friend Nicole and I were on the Fiesta Bowl Queen and Court as Fiesta Bowl Princesses while we were juniors in college.  Nicole was at ASU and I represented UofA and we clicked almost instantly.  She was my bestest princess buddy and because of her company and her incredible family, the college football season was a blast and what I consider to be one of the most rewarding times in my pageantry career (even though technically it’s not a pageant).  Post college we kept in touch as I moved back to California to Los Angeles and then somehow found myself returning to the state of Arizona.  It was wonderful to spend time with my Nicole.

Today, Nicole and her twin sister Tonia with their sweet mom Diane own the popular and posh bridal and prom gown boutique, Uptown Bridal & Boutique in the old historic part of Chandler, Ariz.   The store is darling.  The dresses are gorgeous, the experience is one of a kind and many of my brides have purchased their gown there.  I love that we’re in the same business now!

I am honored and excited to share the story of Nicole and Graham, and their little princess Charlotte, their first daughter of two.  Charlotte was born with a cleft lip.  She is beautiful, well spoken, divalicious, and an utter and complete doll as you can see during the times she’s stepped in front of my lens.  Nicole started Million Dollar $mile Celebrations which is not a business but a way for her to create awareness and raise funds through celebrating.  Charlotte doesn’t get birthday gift for herself, even though it’s her birthday.  Instead, she requests gifts and donations that will be given to other children, just like her, to raise awareness, and to remember all the other people who helped her.

A little Q&A session with Nicole to educate you about this birth defect and how common it is.

What was your first initial reaction when you found out Charlotte was going to have a cleft lip?

The moment that I saw the black and white screen displaying my baby’s face, I instantly knew something wasn’t right. My heart sank, the room grew quiet, my dreams seemed to crumble, the ultrasound technician tried to get a better image, the room grew colder, and I looked into the teary eyes of my husband, as my sister asked, “What’s on the baby’s lip?” I didn’t need to hear the answer. I already knew; a cleft lip. As the ultrasound technician began to explain, the information entered my head, but didn’t settle upon my heart. I didn’t cry. Graham on the other hand shattered. He went into the attached bathroom and I could hear him sobbing. My mother and sister cried silent, helpless tears. Steadily, I listened to the diagnosis with such bravery that I even surprised myself; a unilateral cleft lip with suspected cleft palate. We left in shock with the printed images of our daughter.

What was the most challenging part as a parent having a child with a cleft lip?

Later that night we found out Charlotte was going to have a cleft lip, Graham and I crawled into bed, cried together, and spent the day mourning the loss of our “perfect” baby girl.

“I thought she’d be beautiful?” my husband would cry.
“She’ll be beautiful to us.” I’d reply.

I dragged myself out of bed and onto the World Wide Web. BIG mistake. I had yet to discover the helpful “cleft” websites and instead found myself viewing scary images and terrifying information. Then I found cleftline.org. I stayed up all night long, watching the clock, waiting for morning to call the Cleft Palate Foundation’s Cleftline. I was the first call of the day and received the comfort and information that my hurting heart needed so badly. After two more ultrasounds, a neonatologist visit, two meetings with surgeons, and an amniocentesis later, Graham and I were ready to meet Charlotte.

The delivery on March 24, 2008 was picture perfect. She was placed on my chest not facing me so I asked her to be turned around that I could see her face. What I saw made me cry harder than ever before, “She’s beautiful!” Graham and I put our heads together, took turns kissing each other and our new baby, releasing “happy” tears along with five months of tense thoughts and unknown fears. Our daughter was here, just as gorgeous as we had ever imagined, and we were instantly in love.

What did you and your husband do over the first year to fix Charlotte’s cleft lip?

Charlotte lived up to her name. She was strong, enduring a NAM device, daily taping, and her lip revision at three months and three days. Along the way, she won the love of all those she met; our little Miss Congeniality. Looking back, I am saddened that we expected more than a healthy baby. We craved “The World’s Most Beautiful Baby,” and I thank God that Charlotte was born with a cleft to teach me a little something about true beauty.

What are the causes of a cleft lip and palate?

Cleft lip & palate is the most common birth defect in the United States.  Approximately 1 in 600 babies are affected.  Although genetics and environment can be a cause, I have come to believe that our ‘birth defect’ was something bigger than myself… a blessing!  Since Charlotte’s first birthday celebration in 2009, we have gathered donations from friends and family members at each and every birthday for local, national, and international Cleft lip & palate charities and foundations.  I have spoke intimately with other “expecting” and new families and publicly at national conferences. I’ve found myself becoming a Pathfinder, mentor, and advocate for others like myself.

What would you say to parents who might experience what you and your husband went through?

Congratulations on the birth of your new baby.  The birth of a child is a special time bringing a full spectrum of emotions; joy, fear, excitement and anxiety.  The birth of a child with a cleft lip and/or palate can cause many more feelings and questions.  I know this from experience.  My daughter was born in March 2008 with a cleft lip and palate.  I remember the exact moments of discovering my daughter’s cleft during an ultrasound, looking at her face for the first time, and seeing her smile after her first lip surgery.  Please believe me when I say that I wouldn’t change a single one of these moments if I could.  I have attached my daughter’s full story if you wish to read about my family’s experience. If you are a parent that will be born with a cleft lip & palate, click here to read Nicole’s letter to you.

What do you hope to accomplish through all of your roles?

Me as a mom: We don’t know why or what caused Charlotte’s clefts.  She had two mandatory surgeries in her first year… the first was the hardest.  she was 3 months and just barely 10 pounds.  she’ll have two more to improve the overall esthetics.  I had/have a 1/25 chance of having another baby with a cleft (ps. we’re done)  but my second daughter was born unaffected. My daughters will both have a higher risk of having a baby with a cleft.

Me as a mentor: I have been trained with both a local and national foundation to give advice and support others in a similar situation.  But, every single family that I have had the pleasure and privilege of lending an ear to or offering my advice came into my life from a friend or a friend of a friend… it’s a huge planet, but a small World. 1 in 600 babies are affected

Me as a party gal: In my lifetime, I hope I can raise $1,000,000.    At the current age of 3, Charlotte is already aware and excited that her birthday is a day of celebrating and giving to others. With countless parties ahead to plan, we set our eyes on the BIG money… a million.  I know an annual party alone won’t raise a million but it’s a start.

How you can help: “Like” Million Dollar $mile Celebrations on Facebook during the month of March (this month!) and for every new fan, $1 will be donated to a cleft organization. It’s as easy as that!

More information: Million Dollar $mile Celebrations BlogMillion Dollar $mile Celebrations on Facebook

Diana Elizabeth says there is nothing like growing old with friends, to have been at Nicole and Graham’s wedding, seeing two little girls added to the family.  Life is so amazing the older you get with the company you have to surround you.

Diana Elizabeth is an author, photographer, and obsessive antique shopper. You can typically find her in her garden wrist deep in dirt, at a local estate sale or planning her next epic party.

7 Comments

  • amber

    Does Nicole have her own blog about her journey? I would love to see it. Some of the links above did not work so I was hoping to hear more possibly.

  • Tonia Tinker

    As one of Charlotte’s biggest fans, I can confirm that her imperfection at birth was the perfect start to an amazing, smart, funny, gorgeous, and all around FABULOUS little girl. Thanks for sharing the story, Di!

  • Yucel

    That dress is woven so well into these photos… beautiful.

  • Laura Wilson

    What an amazing testament to the impact one little girl and her family can have on countless others. It’s a beautiful thing!

  • Krista A. Jones

    What a beautiful and inspiring story! It’s so heart warming to hear about Nicole’s positivity and her commitment to help others!

  • Nicole

    Diana,
    I can’t thank you enough for your support and love. Your talents are limitless and love is so appreciated!
    Nicole

  • Renee

    I love you! This post is so great and she’s BEAUTIFUL!

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