Girl with rare condition thrives despite many obstacles
Nov 15, 2017, 9:48:43 AM CST Sep 5, 2018, 10:09:26 AM CDT

Girl with rare condition thrives despite many obstacles

Rather than dwelling on her diagnosis of CCD, Bridget focuses on how she can bring smiles to others

Share:
patient, Bridget sitting on some leaves in the park during fall patient, Bridget sitting on some leaves in the park during fall

Bridget is happiest putting smiles on people’s faces. Despite the many obstacles she has overcome, the 10-year-old thinks of others before herself.

“Helping people has always been a dream of mine,” Bridget says.

Life-changing diagnosis

When Bridget was born, the medical staff thought she had respiratory issues but quickly realized that she was missing clavicles, which caused her chest to look concave. Bridget was diagnosed with cleidocranial dysplasia (CCD), a rare skeletal disorder characterized by differences in the face and skull shape, open fontanelles (soft spot), small or absent clavicles (collarbones) and multiple dental abnormalities.

Bridget’s parents, Malissa and Brian, were very familiar with CCD: Brian also has CCD, and as scientists, they had researched the disorder.

“When we first found out, we were scared,” Malissa says. “Brian was upset because he didn’t want Bridget to go through all the dental procedures he did.”

While Malissa and Brian knew most of what to expect, they also knew the journey could be different for each person.

Finding the right specialists

When Bridget was 4 years old, the family moved to the Dallas metroplex. Malissa and Brian began the search for a dentist who treats CCD. A local dentist referred them to Carolyn Kerins, D.D.S., dentist at Children’s Health℠ and associate professor and graduate program director of the Pediatric Dentistry Residency Program at UT Southwestern. Malissa says she was amazed to find a place nearby that not only treats CCD but has all the specialists Bridget needs.

Dr. Kerins says the most important step patients diagnosed with CCD can take is to find a dentist who knows the disorder and can refer to the appropriate specialists, such as an orthodontist and oral surgeon for management of the condition.

“Patients need to not hop around from dentist to dentist, but instead have a dental home,” Dr. Kerins says.

Alex Kane, M.D., director of pediatric plastic and craniofacial surgery at Children’s Health and associate professor of plastic surgery at UT Southwestern, leads the craniofacial team in the Fogelson Plastic Surgery and Craniofacial Center at Children’s Health. The team includes a pediatric geneticist, endocrinologist, craniofacial surgeon, oral surgeon, orthodontist, ENT, dental specialist, speech and physical therapists and psychologists. The craniofacial team currently treats 12 patients with CCD.

“The team approach allows us to deal with unusual conditions,” Dr. Kane explains. “We come up with a specialized plan for each patient to follow.”

Expert care at Children’s Health

With CCD, children often have multiple impacted teeth that do not come in or erupt on their own, as well as supernumerary (extra) teeth that may also get in the way of permanent teeth erupting. After extractions of primary teeth, if the permanent teeth do not come in on their own, the extra teeth may need to be extracted and orthodontic treatment is needed to guide these teeth in place.

Bridget had eight teeth pulled two years ago. Seven months later she underwent oral surgery to expose 12 impacted teeth and to have nine extra teeth removed.

“After the procedure, we treated those exposed teeth using an orthodontic appliance, which is basically a retainer to maintain arch length, and we modified it by adding loops with additional wire to guide the eruption of impacted teeth,” says Yong Jong Park, D.D.S., craniofacial orthodontist at Children’s Health and volunteer professor of plastic surgery at UT Southwestern.

The appliance was removed several months ago, and Bridget now has braces, just like many of her peers. Malissa says her daughter feels more normal with braces in the fifth grade.

“We are all learning as we go,” Malissa says. “We want the timing of her treatment to be just right; I didn’t want all of it to happen in middle school or high school. Those are times you really don’t want to be different from your peers.”

Bridget has dealt with other issues like needing hearing aids because the bones in her ears do not vibrate as well as they should. She recently had her tonsils removed and needed to have another tooth pulled. She has a palate expander, and she will wear braces for many years. The condition causes children to be smaller in size – Bridget just recently transitioned out of toddler shoe sizes.

Through it all, Brian has been adamant that they do not treat her differently than anyone else.

“It’s hard, because as a mom I want to protect my baby in any possible way,” Malissa says. “But Bridget has so much confidence and an amazing ability to handle all of this. She is stronger and braver than anyone I know.”

Calming Bridget’s fears

At the beginning of her treatments, Bridget’s anxiety was extremely high as she anticipated the pain, but the staff at Children’s Health worked with her, and now she feels more at ease.

“The hardest part is not being like everyone else and all the pain I go through, but over time I’ve gotten used to it,” Bridget says. “The doctors are very nice and always tell me ahead of time what is going to happen.”

“Some of the methods we used were explaining everything with visual aids so Bridget could understand the purpose of the appliance and tools,” says Lilly Tinsely, R.D.A., dental assistant at Children’s Health. “Once she was on the chair, we worked on calming her anxiety by using breathing methods, a stress ball and giving her enough time to collect herself.”

Bridget says her team makes a big difference in her care and how she feels.

“Dr. Kane is really funny and enthusiastic, and I love when he brings other doctors to the team meeting to show them what I can do,” Bridget says. “Dr. Park is bright and informative, and Dr. Kerins is very cool – she comforts me and makes me happy before starting anything.”

Malissa agrees and especially appreciates how the caregivers tailor treatment to Bridget’s needs.

“We were constantly advocating for Bridget until we got to Children’s Health,” Malissa says. “None of this is easy – seeing your child go through the pain of surgeries and procedures. But now we have a team who works together and talks all the time to make sure we’re on the same page with her long-range plan. The staff has been amazing at being available and finding people to talk to when another issue comes up. They listen to me.”

Bridget with family

“I don’t think there’s anything out there Bridget can’t do”

Bridget keeps her spirits high by hanging out with friends, writing songs and spreading awareness about CCD. The most recent song, “Rise and Fall,” is about a girl who experiences bullying but stops it by standing up for herself. Bridget helps Malissa with CCD Smiles, a charitable organization started by a doctor with CCD who wanted to give back. She also stays active on an Instagram account to show the realities of daily life with CCD.

As for future treatment, Dr. Park says Bridget will need multiple phases of orthodontic treatment and jaw surgery depending on her growth. She may need another surgical exposure of impacted teeth and extraction of extra teeth as well.

Overall, Dr. Kane says Bridget’s prognosis is great. As Malissa looks towards her daughter’s future, she says, “I want doors to be wide open for her. I don’t think there is anything out there that she can’t do. I just want her to be happy.”

For Bridget, who has known doctors and hospitals for most of her life, she hopes to fulfill her dream of helping others by giving children the same kind of care.

“I would love to be a pediatric nurse or anesthesiologist when I grow up.”

Learn More

The Fogelson Plastic Surgery and Craniofacial Center at Children’s Health provides diagnosis and treatment for children of any age with any reconstructive need. Learn more about our programs and services.

Sign up

Stay current on the health and wellness information that makes a difference to you and your family. Sign up for the Children’s Health newsletter and have more expert tips and insights sent directly to your inbox

craniofacial, patient story, self-esteem, treatment

Childrens Health