"I was in total shock," Madera recalls. "I was devastated, to be totally transparent."
Madera, now a public relations manager for CHRISTUS Health who lives and works in San Antonio, knew nothing about the conditions, which result when a baby's upper lip and/or roof of the mouth don't properly fuse together. She worried it was her fault.
"I'm kind of going through my day-to-day life, like 'Was it the hair spray I used — or something else I did or didn't do?'" Madera says.
During the second half of her pregnancy, she scoured the internet, learning the exact cause is often unknown. She also made connections with mothers of other affected children, finding hope in before-and-after surgery pictures and stories of their happy lives.
In November 2020, Madera and her husband, Chance, welcomed their son, Archie, basking in what she calls the "golden moment" of holding her new baby. Nearly six years later — and after four surgeries and many visits with specialists at the CHRISTUS Children's Pediatric Craniofacial & Cleft Palate Clinic in San Antonio — Archie is a rough-and-tumble kid, who's mastering Brazilian jujitsu and loves to play with cars, trucks and dinosaurs. He started kindergarten this month.
"He was ready to go and very excited about it," Madera says.
Inspired by her son, she wrote a children's book that turns his challenges into super heroics. At the urging of her husband and friends, she published it.
'Exactly what I needed'
One in every 700 infants is born with orofacial clefts. Archie has unilateral cleft lip and palate, meaning both are present on one side of his face.
Shortly after Archie's birth, a therapist came to the hospital room to help Madera and her husband feed their newborn. Because of the COVID-19 pandemic, the therapist wore a mask.
"And then she pulled her mask down and showed us the scar above her lip," Madera says. "And said, 'You're going to be fine,' — exactly what I needed in that moment."
Madera learned how to tape Archie's lip to help it begin to grow together and to insert a custom plastic plate to reshape Archie's gums, lip and nostrils before surgery.
During frequent visits throughout Archie's infancy, Madera, her husband and Archie became well-acquainted with the CHRISTUS Children's Pediatric Craniofacial & Cleft Palate Clinic.
At six months, surgeons repaired the cleft in Archie's lip. Four months later, they connected his palate. Archie later underwent two tympanostomies, the insertion of ear drainage tubes, related to his cleft palate.
Dignified and compassionate care
Each time her firstborn was anesthetized, Madera, who's never experienced surgery herself, worried. But the CHRISTUS team — which includes specialists in surgical reconstruction, speech therapy, hearing, dental/orthodontics and psychology — eased her mind.
"They know how to talk to children, and they know how to talk to parents to help them digest all the information," Madera says. "They treated me, my husband and my son with dignity and compassion the entire time."
While surgical excellence is imperative, ensuring that patients and families feel cared for is also essential, says Dr. Alejandra Garcia de Mitchell, clinic medical director.
"We want them to be comfortable in all aspects of their care, to be involved in the decisions, and understand what is being proposed and what the options may be," Garcia de Mitchell says.
Revolutionary approach
The clinic houses its array of specialists together, providing convenience for parents already overwhelmed with the typical demands of a newborn or young child on top of the specific needs of a cleft-affected child.
While cleft repair hasn't changed drastically since 1955, when a U.S. surgeon pioneered the rotation-advancement flap technique that remains a standard procedure worldwide, a nationally connected team concept has revolutionized treatment, Garcia de Mitchell says. Centers around the country communicate with each other, sharing information about procedures and outcomes. If a family moves to a new city, their child's treatment can continue seamlessly.
Garcia de Mitchell enjoys keeping up with patients and their progress through planned community activities for patients and families.
"It warms my heart," Garcia de Mitchell says. "That's why I do this."
'I hope he dreams big'
Not long after Archie made Madera a mother, he also inadvertently nudged her into several other new roles. For one thing, she changed careers. Until Archie was 1, she worked as a TV news reporter. The morning shift that required her to wake up at 2 a.m. became more difficult after having a child. In early 2022, Madera joined CHRISTUS as a public relations specialist.
"Stepping into this role felt like a no-brainer because it was a place where I felt safe with my child, and I wanted to help other parents through an uncertain time," Madera says. "I'm not a healthcare provider, but storytelling really has a role in advocating for a place of healing and hope."
Madera also is now an author. When Archie was a toddler, she wrote and published an illustrated children's book called Archie the Cleftie: A Tale of Strength, Resilience, and Courage.
Madera originally intended the book just for Archie after he came home from daycare saying another child said his nose looked "funny." She realized the comments would multiply and become harsher as her son got older.
The book details Archie's conditions and surgeries. Each time he undergoes a surgery, he emerges with a new superpower. "Strength and bravery and resilience and courage," Madera says.
Madera's husband and some friends encouraged her to publish the book, which is now available on Amazon.
"People who are not even cleft-affected have purchased the book just from the strength and resilience message," she says. "You can apply it to any kid who's going through anything."
Three years ago, Archie became a big brother when Madera had her second child, Penelope. Around the time Penelope starts kindergarten, Archie will undergo a bone graft surgery to fully close his palate.
As Madera looks ahead, she envisions her son growing into an admirable young man.
"I hope he accomplishes anything he wants to. I hope he dreams big. I hope that he is a kind person," Madera says. "And I hope he does not let any of his differences dictate who he is or what he's capable of. I want him to know that a cleft is a part of his story, but that it is not his entire story."