Hacer que los niños sean completos

Making Kids Whole

This story first appeared in the Winter 2021-22 edition of the Saint John’s Foundation magazine. To read the Saint John’s Foundation magazine, please visit saintjohnsfoundation.org/magazine.

BY MELANIE ANDERSON / PHOTOGRAPHED BY JEFF BERTING

Vanessa Garza was halfway through her second pregnancy when a routine ultrasound detected a shadow on her baby’s face. Doctors suspected a cleft lip and possibly a cleft palate, which are some of the most common birth defects.

“He was eligible to do an ultrasound every month, so it became more and more evident that, yes, there’s a cleft, and it’s a bilateral cleft affecting both sides,” says Garza. “Then it became more evident that the roof of the mouth was also involved, so it was also a cleft palate.”

As babies develop, a gap in the lips and roof of the mouth is normal but it usually closes in early pregnancy. Since clefts interfere with the baby’s ability to nurse, it’s crucial to line up care before birth. Garza, whose family lives in Encino, researched cleft care programs throughout Los Angeles and ultimately chose the Cleft Palate Center at Providence Saint John’s Health Center.

“What struck me with my visit to Saint John’s was the amount of individual attention and how the meeting was organized,” says Garza. “The late Dr. Janet Salomonson [a plastic surgeon and Cleft Palate Center medical director from 1998 to 2013] and current nurse coordinator Ann Masson had a binder with the before-and-after pictures. They explained how treatments and approaches to reconstruction and repair evolved. I learned that Saint John’s was a pioneer in cleft care. It was very clear that my family was going to receive a community-based model of care with renowned, state-of-the-art technical expertise.”

Choosing a cleft care team is a big decision since children typically require care from birth until they’re fully grown. Today, Garza’s son Julian is a thriving 11-year-old who enjoys surfing, bike rides and online games and continues to receive cleft care at Providence Saint John’s.

PIONEERING A PERSONALIZED, TEAM-BASED APPROACH TO CARE

Founded in 1964, the Providence Saint John’s Cleft Palate Center was the first cleft care team on the West Coast. Serving families from all over Los Angeles and Southern California, the center is supported by the Community Impact Fund (CIF) at Saint John’s Health Center Foundation.

“Dr. Leslie M. Holve, pediatrician [and the center’s founding medical director, who passed away in May] and pioneers who followed him, both in Los Angeles and around the country, saw the fundamental importance of providing multidisciplinary care to children, because at different points in their lives they require different types of care,” says Reza Jarrahy, MD, craniofacial plastic surgeon and codirector of the Cleft Palate Center and the surgical director.

Since no two clefts are the same, patients also require individualized care. “These kids don’t all need the same things at the same time, and some might need more support in certain areas than others,” says Danelle M. Fisher, MD, pediatrician and program co-director and medical director. “It’s a unique challenge with each family that walks in the room.”

The Providence Saint John’s cleft care team assembles for clinics, which allow families to see multiple providers on a single day, typically every six or 12 months. The core team includes plastic surgeons, pediatricians, pediatric dentists, speech pathologists, audiologists, otolaryngologists (ear, nose and throat physicians), social workers, pediatric nurses, genetics specialists, orthodontists and prosthodontists.

“We each take turns going in, speaking with the family, examining the child and formulating a plan,” says Dr. Fisher. “After clinic is over, the team gets together and everybody gives their input about each child.” Afterwards, the team shares a report with the child’s family and care providers. “It’s just amazing to be able to get to solutions in one day,” says Garza.

The Providence Saint John’s cleft care team also coordinates an annual symposium—started by Dr. Holve— focusing on the latest strategies and treatment in cleft care across disciplines and providing an opportunity to hear from families, including the Garzas, about the patient experience. “It’s really important to understand a 360-degree view of this patient and what they go through,” says Dr. Fisher. The 2021 symposium marked the 52nd year of the event, which draws specialists from across the country.

SUPPORTING CHILDREN WITH CLEFTS FROM BIRTH TO ADULTHOOD

After Julian was born, Garza’s first priority was learning to feed him with a special bottle using her own pumped breast milk, as well as donated milk. Like most babies with cleft lips and palates, Julian had his first two surgeries, which involved repairing his lip and palate and helped him breathe and eat more easily, before his first birthday.

“I’m teary-eyed as they’re rolling him away, and he’s in this oversized toddler hospital gown,” says Garza, recalling Julian’s lip repair surgery at just 10 weeks. “At that time, they told us it’s likely he needs ear tubes, so he got his first set of ear tubes. We did that as much as possible, what we call two-for-ones.”

“Every step of the way, if there’s indication for any other surgical intervention, we go out of our way to make sure the surgery is coordinated so kids don’t have to undergo anesthesia twice,” says Dr. Jarrahy.

“Having surgery is very traumatic for a child and anxiety-producing for parents. Our job is to address those concerns and anxieties for the child and the child’s parents.” Like many of his peers with clefts, Julian has attended speech therapy twice a week since he was in diapers.

“In the age group of about 1 to 5, children are really developing their language skills. When children have problems with cleft lip or cleft palate, it very much can affect their speech and that affects how they communicate with the world,” says Dr. Fisher. “This is why speech therapy is such a crucial part of our team care.”

As children become more aware of their appearance around school age, Dr. Jarrahy sometimes does revision surgeries on the lips and nose. Psychosocial support is available to children who experience bullying or other challenges. “As they move through their childhood, we try to get them on the same footing as their peers,” he says.

Orthodontics often becomes important since clefts may affect alignment of the teeth. For some patients, the final big procedure is a jaw surgery, which is done between the ages of 16 and 21 after the patient has stopped growing and completed orthodontic preparation for the surgery. Some therapies can be prohibitively expensive, so the CIF provides scholarships to families that would otherwise have difficulty accessing speech therapy. “It’s our safety net, and these therapies are so impactful for these children and for us being able to provide excellent, ongoing care,” says Dr. Fisher. “We simply could not do it without the generous CIF grant, and we are immensely grateful.”

As Julian has gotten older, he has become deeply involved in his care. “He’s very well-versed on the issues that pertain to his situation–almost to the degree of sophistication of some of my residents in the plastic surgery residency,” says Dr. Jarrahy. “He takes everything in stride.”

After 11 years, the personalized care of the Providence Saint John’s team continues to impress Julian’s mom. “They have truly sourced the best of the best in the community,” says Garza. “I can’t get over that. My biggest fear is them all retiring before Julian is done.”

Dr. Fisher and Dr. Jarrahy agree it’s the care team as well as dedicated families like the Garzas that make the Providence Saint John’s program special. “We have a smaller number of patients compared with academic centers, but we are so involved with these patients,” says Dr. Fisher. “Providence Saint John’s has a very personal feeling about it. It truly is a labor of love and a passion project, starting with the people who founded the team more than 55 years ago.”

Dr. Jarrahy, who introduced Julian to his godson of the same age, considers his patients to be part of his extended family. “It’s really rewarding to know that when I meet a child, I’ll be part of their lives and they’ll be a part of mine for the better part of two decades,” he says, “and that’s part of the beauty of how we deliver cleft care at Providence Saint John’s.”

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Learn more about the Cleft Palate Center at Providence Saint John's:

Providence Saint John's Cleft Palate Center

About the Cleft Palate Center

Nationally recognized for its innovative and compassionate approach, the Cleft Palate Center at Providence Saint John’s provides comprehensive, state-of-the-art care to children with cleft lip and/or cleft palate. Cleft lip and cleft palate are the most common craniofacial conditions, occurring in about one in 700 births in the United States. Proper treatment of cleft lip and cleft palate requires the skills of many specialists including maxillofacial surgeons, audiologists, speech language pathologists and psychologists, among others.

At Providence Saint John’s, our multidisciplinary team offers continuous diagnostic, surgical, social and educational services to children and their families throughout the treatment process. Our hope is to provide long-term care for each patient that aligns with their growth and development, and makes each family feel supported and cared for.

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