Celebrating Smiles: A Cleft Lip and Cleft Palate Journey

by Rachel Quarnberg July 01, 2020

Celebrating Smiles: A Cleft Lip and Cleft Palate Journey

At the 20 week ultrasound, Cara and Tanner Marchant were over the moon when they found out they were having another baby girl. 

On a hunch, Cara then asked the technician to check for cleft lip. She’d been taking medication and suspected there may be an issue, even though there were no studies linking the medication to the condition.

Her mother’s intuition proved correct when the technician announced, “I’m 90% sure that she has a cleft lip, but I can’t tell for sure if she has a cleft palate as well. I’ll have the doctor look at the images I took to confirm.”

Upon learning their daughter, Emery, would be born with a cleft lip and palate, the Marchants’ minds were flooded with concerns: How many surgeries would she have to endure? Will people make fun of her if she looks different? Will she be bullied? How can we teach her to love herself for who she is? 

A Common (and Treatable) Congenital Condition

Like the Marchants, when Adriana and Pierre Morin found out their baby would becleft affected and born with a complete bilateral cleft lip and palate, there were many unknowns. Despite cleft lip and palate being the most common birth anomalies, affecting 1 in 700 babies globally, they knew very little about the condition.

They came to understand that the condition can affect a child’s physical appearance, and pose difficulties in the areas of feeding, hearing, speaking, social development, and more. But they also discovered that children with cleft and craniofacial conditions, like their son Frederic, can lead happy, healthy, and normal lives with comprehensive care that can span up to 20 years.

According to Adriana, “We have multiple surgeries in our future to help his speech, hearing, eating, drinking and tooth development, as well as any cosmetic surgery he may choose to have. I have to say though, we will be sad after his lip revision. We are so proud of every perfect inch of him, we can't imagine his face looking any other way.”

Preparing for Cleft Lip and Palate

As the Marchants began researching the condition, they found a local parent support group at Primary Children’s Hospital in Salt Lake City, Utah. They encourage others facing this issue to find similar groups.

“At the first meeting, we were able to get so many questions answered and get some real-world advice from parents who had gone through the same things we were about to go through.”

Prior to Emery’s birth, they met with the team of doctors and care specialists who would treat her. The care team included a variety of specialists:

  • Plastic Surgeon who is the technician who performs the surgeries.
  • Orthodontisthelps with mouth and nasal molding, and orthodontic care down the road.
  • ENT(Ear, Nose & Throat) who addresses the ear issues common to cleft lip and palate patients. With the nose, mouth, sinuses and ears connected, kids lacking a palate are prone to ear infections and tubes.
  • Speech Pathologistinitially helps with feeding, and then as speech begins, helps address speech issues. 

Try this: Pay attention to how often your tongue touches the roof of your mouth in order to make different sounds as you talk. Now imagine trying to make those sounds without a roof of your mouth and you’ll begin to understand the challenges these kids face.

  • Social Worker provides emotional support, coping with stress, grief and loss issues, managing family conflict, and connecting families with hospital and community resources.
  • Nurse Practitionerscan serve. as the care coordinator between all the specialties, and makes sure everything runs smoothly

Armed with their new education, support group, and care team, they welcomed Emery in July 2019.  She was born with a bilateral cleft lip and palate. 

 

 

The First Six Months of Baby’s Life with Cleft Palate 

In spite of all the preparations, Emery had a rough start, spending her first two and a half weeks in the NICU due to difficulty breathing and eating. Without a roof of her mouth, sucking proved difficult and exhausting -- little Emery would often fall asleep before eating enough to fuel her growing body. 

An NG tube was introduced to ensure she received the necessary nutrients and calories. Eventually, Emery learned to use a special bottle with a “pigeon nipple.” This special nipple has a flat spot on one side that acts as a pseudo-palate enabling her to use her tongue to squeeze out milk. 

After 17 days Emery was able to go home with the NG tube still down her nose and throat, but still had an average of two to three doctors’ appointments each week up until her lip repair in November 2019.

Because the nose cartilage and skin around the mouth is very malleable when babies are firstborn, and it’s easier for the plastic surgeon to repair a smaller gap compared to a larger gap, the orthodontist works to reduce the gap. 

So Emery saw her orthodontist every other week to help with molding of the nose and lip. Emery had to wear a NAM -- a retainer that acts as the roof of a mouth to slowly bring everything closer together. 

Back at home, Cara and Tanner placed tape across Emery’s lip to stretch the skin. Frequent tape changes due to baby drool and spit up caused her cheeks to be raw, and at times even bleed. 

Every other week, Cara brought Emery to a speech pathologist who watched feedings and offered suggestions to help Emery become a better eater. But despite these efforts, Emery stopped gaining weight. She was working so hard to eat that she was burning more calories than she consumed.

The speech pathologist suggested a G-tube, which is a feeding tube that goes directly into the stomach. So a whole new set of appointments with a gastroenterologist ensued. But it was worth it. Once Emery got a G-Tube, she figured out eating. Soon she was a whole different baby and began gaining weight. 

At one of her speech pathologist appointments, the pathologist noticed that Emery favored one side and she was diagnosed with torticollis, also known as twisted neck syndrome. So the Marchants added trips to the physical therapist every other week. 

Not every cleft lip and palate patient will have to go through all this, but Cara and Tanner want to share that the first few months are rough! They advise parents to be patient, and know that they’ll make it through those tough times.

After months of appointment, in November Emery got her forever smile. Her plastic surgeon, Dr. Gociman, told the Marchants that Emery would look completely different. 

“Boy, was he not kidding! We are so happy with the results.” 

The Road Ahead

Since Emery’s first surgery, the doctor’s appointments have died down quite a bit. Normally, the soft palate is repaired around 10 months, but due to COVID-19, her surgery was postponed to the end of July, just after her first birthday.

They’ll repair the soft palate, and put in a hard palate prosthetic retainer that will act as a hard palate until they repair the hard palate. 

The hard palate repair takes place between 2 and 3 years of age. For the hard palate repair, they inject growth hormone and cadaver bone. The cadaver bone acts as a scaffolding, and then the body grows its own bone with the growth hormone. “This is a much better alternative compared to using part of the baby’s hip bone which was the technique they used to use,” according to Cara.

In addition to the three major surgeries: lip repair, soft palate repair, and hard palate repair, as the face grows and develops, there’s a possibility of more surgeries up until the age of 16-18 after the face is fully developed. The Marchants feel lucky to live so close to Primary Children’s Hospital with such an incredible team of doctors to help navigate this lengthy journey.

 

               

 

Advice to Parents with Cleft Lip, Cleft Palate and Craniofacial Anomalies

Adriana and Cara offer advice to families of children with cleft lip and cleft palate.

Don't be embarrassed to talk about it.  If people stare, tell them what's going on. Adriana remembers having so many questions herself in the beginning, and wishing she had someone to turn to. Since Frederic’s birth, she has been working to raise awareness on cleft affected babies and those craniofacial differences.

 

Get a good support system. Babies can be hard in general so it's OK to ask for help. Find some parents that also have a cleft baby. This can be a great resource for you because if you have questions, they have most likely gone through the same thing. 

 

Be kind to yourself. There’s nothing you did to cause a cleft lip and palate. Though genetics can play a role, there is no known cause. Every baby starts out in the womb with a cleft palate. The two plates in the mouth start out as a cleft and then they slowly come down and fuse together to form the hard palate. For those that are born with a cleft, this process just didn't happen. 

 

Enjoy their cute smile up until their first surgery. Because of their cleft lip, their smiles are so big and so cute. Even though you’ll be happy with the lip repair, you will miss the cleft lip. Take lots of pictures so that you can remember it! 

 

Buy the book,Jack's New Smile. It’s a children’s book that helps younger kids and others to understand. If there are siblings, cousins, and friends, this book helps explain the condition. 

 

Love your child for who they are. They may look “different”, but it’s a part of who they are. Embrace it. There is something truly special about these kids. You’d think that with everything they have going on, it would get them down, but they truly are resilient. It’s hard to see them suffer, but just take it a day at a time. You’ll make it through it! You can do hard things!

 

Celebrate your child’s smile. Adriana believes, “Each baby and severity are unique, but the outcome of a happy and loved baby is still the same. This is one of the reasons I'm so impressed with Audrey & Bear and their awareness campaigns. We, of course, ordered Frederic’s swaddle right away since we loved the one we bought his older sister so much, and it's another way to show him off to the world.”

The Inspiration Behind Celebrating Smiles

“Because of your smile, you make life more beautiful.”

Audrey & Bear believes thateveryone has a reason to smile.  Whether you have a cleft palate or lip, have undergone revisions/surgeries, or are working with your comprehensive care team, a smile is the ultimate sign of joy!

Our latest design,Celebrating Smiles, captures that joy with smiling faces in vibrant colors. Notice the subtle texture on the smiley faces, which are strategically placed to represent the varying facial locations of anomalies.  Cleft lip reconstruction typically leaves a small scar line, which is depicted via the textured nature of the design.

As with any of our Audrey & Bear designs,Celebrating Smiles can be customized so that it’s absolutely perfect for the recipient.

We are here to listen, learn, and support all those that endure the cleft and craniofacial anomaly journey. It is our hope thatCelebrating Smiles puts a smile on your face and on the faces of all those that are affected by these conditions.


Rachel

 

 

 

Rachel Quarnberg
Rachel Quarnberg


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