Two Generations Turn to Lucile Packard Children’s Hospital Stanford for Cleft Lip and Palate Care

The moment Vanessa Garcia of Hollister, Calif., was born in 1985, doctors knew that the two gaps in her top lip and the division of her upper gums would make it impossible for her to eat.

Doctors rushed her to Stanford Hospital, where she was given a feeding tube to help her survive until her first surgery there a few months later. Over the next 15 years, she had more than 10 surgeries at Lucile Packard Children’s Hospital Stanford to reconstruct her lip, gums and the roof of her mouth so that she could eat, speak and breathe normally.

“For me, it was a little bit difficult because I didn’t have anybody in my family who had it or could relate to it,” says Garcia, now 29 and mother of two boys and a girl. But times have changed for Garcia’s two sons, Malachi and Ezra, both of whom were born with combined cleft lip and palate similar to their mother’s.

“From when I was born to now, having two sons, there have been so many advancements,” says Garcia. Elena Hopkins, NP, was there when Garcia was a 6-year-old surgery patient in 1991, and is still at the hospital today as coordinator for the Cleft and Craniofacial Center. She’s seen the evolution of cleft and craniofacial care across two decades.

“Today, 80 to 90 percent of our patients are diagnosed via ultrasound during pregnancy,” says Hopkins. “We get involved with families prenatally, in conjunction with our Fetal and Maternal Health Services at Stanford Medicine Children’s Health, and stay with them through the time they’re 18, helping them navigate the many services involved in treating cleft lip and palate.”

Depending on each child’s diagnosis, those services can include everything from genetics, dentistry, orthodontics, otolaryngology, ophthalmology, neurosurgery, audiology, speech therapy and, importantly, social work, child psychology and psychiatry. Kids are also referred to the Hospital Educational Advocacy Liaisons program to address any academic or school-setting challenges.

“Self-esteem takes a huge hit with this diagnosis,” says Hopkins. “It can cause depression and problems in school. We see patients every six to 12 months, not just for surgeries, but to be proactive and provide support wherever it’s needed.”

Ezra, now 16 months, and Malachi, now 9 years old, were both diagnosed with cleft lip and palate when Garcia was about four months along in each pregnancy. Luckily, neither of them had trouble eating when they were born. Ezra came to Lucile Packard Children’s Hospital Stanford for his first surgery when he was 3 months old. During that surgery, Rohit Khosla, MD, assistant professor of plastic and reconstructive surgery at the Stanford School of Medicine and co-director of the center, repaired the baby’s lip and nose. “People don’t even know Ezra was born with a birth defect because Dr. Khosla did such an amazing job,” says Garcia.

Seeing Ezra’s success, Garcia decided to bring her older son, Malachi—who’d already had a few unsuccessful reconstructive surgeries elsewhere—to Dr. Khosla and his team. “When cleft palates aren’t fixed properly, patients can’t speak normally,” says Khosla. “Because Malachi is now older, he tries to compensate for his poor speech with incorrect sounds. We had to completely redo his palate, take it all apart and do it over. I had to find the muscles and bring them together, and recruit extra tissue from the back of his throat. Everything has now healed, but he still requires extensive speech therapy.”

Many factors, both genetic and environmental, can cause the failure of the zones of the face to fuse in the womb in the first eight to 10 weeks of life, explains Khosla. Most are random, biological events, so there is no single genetic marker or test for the defect. But, in cases like that of Garcia and her sons, when one child is born with cleft lip and palate, the chance of having an additional sibling with the defect increases dramatically.

Jonathan Bernstein, MD, assistant professor of pediatrics and of genetics at the School of Medicine and co-director of the center, points out that many people think cleft lip and palate is a birth defect seen only in other countries, among impoverished or medically underserved populations. “It’s also common in the United States,” says Bernstein. “We treat hundreds of kids with this and related problems each year in our program, from every walk of life.”

Ezra and Malachi each are undergoing another surgery this summer. Most patients will need, on average, about six surgeries before adulthood, staged with their development.

“In the years since Vanessa was first seen here, we’ve developed some subtle differences in technique that give better results,” says Khosla. “Our goals are functional as well as aesthetic. Our hope is that when kids graduate from our program, they’ll be fully functional, productive, happy people with normal speech and breathing who don’t need any further surgeries in adulthood.”

Discover more about our Cleft and Craniofacial Center or call (650) 723-0290.

Family photo by Deanna Rose.