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Cleft-Craniofacial Community Stories

Update: Charlotte’s Lip Revision

Charlotte’s original story
First Update: Charlotte turns one

I get to share my life, heart, and home with a vivacious, spunky, and VERY strong-willed young lady named Charlotte Marie.  We’ve been enjoying the amusement park of childhood with Charlotte, including the twists and turns, screams and giggles of being a child born with a cleft lip and palate.  Up until this past summer, we’d been safely buckled in the ‘Kiddie Coaster’ with no big events or changes related to her cleft lip and palate since the two surgeries in her first year.  But the summer before her fifth birthday meant a lip revision surgery (a ride on the BIG KID coaster… and the first experience that she would remember)!

Charlotte does not like shots. And by that, I mean, scream her head off… hear her down the street… poor nurse who has to do it… seriously dislikes them!!  So, when we discussed a lip revision surgery with our AMAZING team, I was more than a wee bit hesitant.  Her face, lip and nose included, looked pretty cute to me, and her scar from almost four years before was faded to near perfection.  It would have been easy to pass on the surgery and let Charlotte enjoy a surgery-free summer, but my husband and I decided long ago that we would proactively make decisions to achieve the best outcome for our girl.  After all, this ‘new’ smile will be worn on the first day of Kindergarten and most likely her Junior Prom!!  Our surgeon said with patience and time, we’d be happy with a lip and scar revision surgery.  So, we bought our tickets to the thrill ride and DIDN’T tell our daughter.  I’m not sure if this was right or wrong, but I know Charlotte, and I waited for the right moment.

The night before the surgery, I casually brought out the baby books after the bath time and before the story time.  I showed her baby pictures , pre and post-surgery (which she has seen often) and told her it was time to have another surgery with a long drawn out explanation, props, and many analogies involving her favorite movie characters.  I waited… on the seat of my chair… just waited.

“Oh man, here it comes.  Sound the alarm, wake the neighbors, it’s going to be a long night”!  I thought.

“Ok, Mom!” she responded.

I walked out of the room and had two thoughts, “ONE… she has no idea what I’ve just said,” or “TWO… that went well.”  We didn’t know how the surgery morning was going to play out or when the first drop of the coaster was going to make her scream.  I have to say the fasting period and pre-op room wait is much easier with a preschooler!  Movies on her private TV, Nurse Heather bringing her a special princess Barbie, and a very child-friendly explanation (including a presentation on an iPad) of what was going to happen in the operating room was excellent.

Charlotte did have a moment of weakness when she was told it was ‘almost time’, and I instantly felt the same fear and anxiety from so many years ago.  We both almost lost it… STOP THE RIDE!  But, then a ‘good part’ of the movie came on and we were through the first loopy-loop.

The nurses came to wheel her back and my heart froze.  Was it too late to take my beautiful (already repaired) girl home?  I could already hear her screams of fear and see her reaching back for us with all her might.  Instead, they started rolling her back and asked her if she knew any songs.  As she started to sing her favorite song from “Sound of Music,” the nurses blew a flurry of bubbles from wands, leaving us watching in awe, amazement, and the very familiar anxiety of sending your child into surgery.  Hang on tight!!

Charlotte’s stitched up face greeted us at post-op.  She was puffy and red (from the medicine) but thankfully not crying.  The surgeon described her as “composed” the whole time and I cried… because that’s what I do!  Recovery went as well as expected trying to keep a four year-old relaxed and safe with a two-year old sister romping around the house.  Charlotte enjoyed an afternoon away at the theaters, watching another BRAVE princess, Merida, and posed for a few stitched-up smiles.  After the ten day milestone, we unbuckled our seat belts and CHEERED!

IMG_4610As I finish typing this, it feels like just yesterday, I sat here at the computer and wrote our ‘love story’ for our daughter and her brave adventures of being a child born with a cleft lip & palate.  Last week, she turned 5!  We had another big celebration, asking guests to bring donations to CPF and to our local surgical team in lieu of gifts.  Charlotte will tell you all about her amazing party, the delicious treats, and what she receives at her parties… “donations for kids like me!”  Simply stated!

Ps. We had her party this year at a mini amusement park.  Charlotte loved the Kiddie Coaster!

Charlotte’s original story

First Update: Charlotte turns one