On September 21, 2010, Stephanie Estevez gave birth to her son Nico Estevez at a local hospital. During her delivery, her OB/GYN noticed that Nico had a hole on the roof of his mouth. Nico was diagnosed with a cleft palate, which is a deformity that can alter the shape of a child’s head and facial bones. While cleft palates are typically found prior to birth, Nico’s was not discovered until he was born.
Stephanie’s doctor determined that the best thing for Nico was to be transferred to MemorialCare Miller Children’s & Women’s Hospital Long Beach which has a team dedicated to treating patients with craniofacial abnormalities. At Miller Children’s & Women’s, the Craniofacial Program part of Stramski Children’s Developmental Center, helps patients recover from their congenital birth defects. The multi-disciplinary team of craniofacial surgeons, a pediatric dentist, orthodontist, oral surgeons, speech therapists, nurse specialists, social workers, work together to develop a case-by-case plan to meet each child’s unique needs.
“I had previously heard of MemorialCare Long Beach Medical Center from my family,” says Stephanie. “After my doctor mentioned Miller Women’s & Children’s was on the same campus, I knew I had to get my son there.”
Upon arrival, Stephanie had a chance to express her concerns to the late, Dr. Sawsan Selem a pediatrics and adolescent specialist at Miller Children’s & Women’s Hospital, and the Craniofacial team. Dr. Selem spoke with Stephanie about the procedures that craniofacial patients go through and explained every step that Nico would need to undergo. The craniofacial team also prepared Nico with special bottles to drink from since it was difficult for him to create suction with an opening in his mouth. In November 2011, Nico was ready for his first surgery at just one year old with a reconstructive surgeon that would perform surgery on his palate in order to repair his tongue.
While at the hospital, Nico would be under the care of Dr. Caitlin Bertelsen, an otolaryngologist at Miller Children’s & Women’s who helps patients with ear, throat and nose issues. In December 2020, Nico would also meet with a pediatric neurologist with the Craniofacial Program at Miller Children’s & Women’s to prepare for the second operation.
Throughout the process, Nico had his tonsils and adenoids removed, a laryngoscopy to view his voice box, a microscopic repair of his upper mouth known as a supraglottoplasty, and a few breathing procedures to clear his airways. He also had an ear tube surgery to drain the buildup of fluid in his right ear. Every surgery and procedure Nico underwent was a success and would continue to keep his family confident in the process
“Miller Children’s & Women’s saved my son’s life,” says Stephanie. “The doctors and care team members here gave me a lot of strength and made me feel good having Nico’s multiple procedures performed at Miller Children’s & Women’s.”
After Nico’s first surgery in 2011, he attended speech therapy twice a week to help him practice speech patterns and other repetition exercises. This is where his previous speech therapist diagnosed him with a speech disorder, known as apraxia of speech. This condition is often seen in patients with a cleft palate making it challenging for them to coordinate words.
Upon each visit to therapy, he grew closer to the Craniofacial team. For the past two years, his current speech-language pathologist, Suki Miceli, has been a major part of his journey. After every surgery, Stephanie feared for the worst, but after a few visits with Suki, she was left with tears of joy when she saw his progress.
“Suki reassured me that Nico would be able to talk,” says Stephanie. “It’s a Godsend to have people like her in the Craniofacial Program because they really connect with kids on another level.”
Today, Nico is 11 years old and has only had one procedure within the last year. He loves going to school to learn his favorite subjects like math and science, and still gets excited when he sees Suki even after all these years. He still visits the Stramski Center where he is working with pediatric dentists to continue to repair his mouth.
“His face lights up and he knows where to go as soon we arrive at Miller Children’s & Women’s,” says Stephanie. “You can see that he really has built a connection and trust with the care team here and has had an amazing experience since he was a baby.”