A Child’s Face Foundation supports children and families through cleft and craniosynostosis care — with timelines, books, and gatherings designed to make a difficult moment feel a little less unfamiliar.
Stage–by–stage timelines for cleft lip & palate and for craniosynostosis.
View timelines → StoriesFour families on the experience of surgery, recovery, and everything afterward.
Read stories → BooksMy Beautiful Scar and Cleft and Craniofacial Team Days.
Browse books → CommunityAnnual Craniofacial Kids Fun Day and family gatherings.
See what’s next →Our team
The foundation brings together leading surgeons, medical experts, and advocates dedicated to supporting children and families through craniofacial surgery. Each member contributes a distinct expertise — helping families feel informed, prepared, and supported every step of the way.
Founder & Patient Advocate
Brown University, Class of 2026 · Applied Math – Biology, Pre–Med
Patient, author, and advocate. Dina was treated for craniosynostosis as an infant and again in adolescence, and founded A Child’s Face Foundation to ensure other families have the resources and community her own family was fortunate to access.
Surgical Advisor
Duke University · Pediatric Plastic & Craniofacial Surgery
Dr. Marcus is a leading pediatric plastic and craniofacial surgeon at Duke, where he has helped develop multidisciplinary protocols and patient–facing tools for families navigating perioperative care.
Clinical Advisor
University of North Carolina · Pediatric Craniofacial Surgery
Dr. Mount is a craniofacial surgeon at UNC and a longtime advocate for family–centered care. She partners with the foundation on resources, clinical content, and the design of family programming.
Spotlight
Craniosynostosis · CHOP
At eight months old, Laurence underwent cranial vault remodeling — a single–stage reconstruction that reshaped his developing skull. His parents had visited several hospitals before choosing the team that would care for him.
“We never once felt like someone wasn’t standing next to us, telling us it was going to be okay.”
Today Laurence is a teenager — thriving in school as a student, athlete, and musician. His family shared his story so that the next family arriving at a craniosynostosis diagnosis could see what was possible on the other side.
Read more family stories →Stories of resilience
Oliver, Anali, Charlie, and Laurence have each walked a different path through craniofacial care. Their families have shared their stories so that the next family does not feel alone.
Cleft lip & palate
“The strength of family, the importance of support networks.”
Oliver was born with cleft lip and palate. His early procedures and surgeries were guided by a team that walked alongside his family at every step. His parents shared his story to help other families recognize what they could not at first see — that they were not alone.
Shared by Oliver’s family
Cleft lip & palate
“You are not alone. Everything will be okay, even if it takes time.”
Anali was born with cleft lip and palate, with a cleft that ran from her lip to her nose. Her first surgery came at five months old; six more would follow. Her surgeries gave her something more lasting than recovery: confidence in herself.
Shared with Valley Children’s Healthcare
Craniosynostosis
“Don’t mess with me — I conquered skull surgery.”
Charlie was two and a half when she told her mother her head hurt. It was the beginning of a journey to a craniosynostosis diagnosis. Today she is back in school, on a softball team, and dreams of becoming a doctor, a teacher, and an author.
Shared with Children’s Hospital of Philadelphia
Craniosynostosis
“From the moment we walked through the door, we were met with compassion.”
At eight months old, Laurence underwent cranial vault remodeling. His parents had visited several hospitals before choosing the team that would care for him. Laurence is now a teenager, thriving as a student, athlete, and musician.
Shared with Children’s Hospital of Philadelphia
Care journeys
A condition–specific roadmap of the milestones, surgeries, and recovery windows families can expect — sourced from major pediatric craniofacial programs at CHOP, Duke, Hopkins, Cleveland Clinic, and Nationwide Children’s.
Care Journey · I
The cleft journey extends from before birth to adolescence — a coordinated team effort across plastic surgery, ENT, speech–language pathology, dentistry, and orthodontics. Each child’s timeline is personalized, but the milestones below reflect the typical sequence of care.
Prenatal — 4 months
Cleft lip is often visible on prenatal ultrasound; cleft palate is usually identified at birth. Specialty bottles and feeding techniques help babies grow normally before surgery. Some infants begin nasoalveolar molding (NAM) — a custom appliance worn for several weeks to narrow a wide cleft and reshape the nose before lip repair.
3 — 6 months
Lip repair restores continuity of the lip muscle that guides mouth growth, and shapes the lip and lower nose. Surgery is performed under general anesthesia.
9 — 15 months
The opening in the roof of the mouth is closed and the muscles needed for speech are reconstructed. Many surgeons place ear tubes during the same procedure.
Ages 1 — 4
Speech evaluations begin around age 1 and continue every six months until normal speech development is established. Hearing is monitored regularly, and ear tubes are replaced if needed.
Ages 4 — 6
Some children require a secondary palate procedure to support clearer speech. Routine dental care begins, and decisions about additional speech surgery are made in close partnership with cleft speech–language pathologists.
Ages 6 — 8
Primary orthodontic treatment may include palatal expansion to widen the upper jaw, preparing the mouth for adult teeth and any future bone graft surgery.
Ages 7 — 10
Bone is taken from the spongy inside of the hip and grafted into the upper jaw at the cleft site, allowing adult teeth to erupt into a stable, continuous arch. The hip is briefly sore but does not affect long–term walking, running, or sports.
Ages 10 — 12
Secondary orthodontic treatment with braces fine–tunes the alignment of permanent teeth.
Ages 17 — 19
A small number of patients benefit from orthognathic jaw surgery to align the upper and lower jaws when orthodontics alone cannot resolve the bite, or from a definitive rhinoplasty at skeletal maturity. Many young adults need no further surgery beyond this point.
Care Journey · II
Most children with single–suture craniosynostosis need one major surgery in infancy or early toddlerhood, followed by a series of follow–up visits across the first year. The path differs depending on the child’s age at diagnosis and which suture is involved.
First weeks — months
The condition is often noticed when a baby’s head shape begins to look unusual. Diagnosis is confirmed by clinical exam and, when needed, low–dose CT or 3D imaging. Families meet with a multidisciplinary team — pediatric neurosurgery, plastic surgery, and often genetics — to decide which surgical path fits the child best.
1 — 2 weeks before surgery
Families meet the surgical team to review the procedure and the anesthesia team for an airway and health review. Lab staff perform blood typing in case a transfusion is needed. Specific fasting and medication instructions are given for the day of surgery.
The surgery — two paths
Two small scalp incisions allow the surgeon to remove the fused suture. Surgery takes 1–2 hours with relatively little blood loss. Hospital stay is typically 1–2 days. Skull reshaping happens gradually over the months that follow, guided by helmet therapy worn 23 hours per day for 6–12 months.
The surgeon removes sections of fused skull, reshapes them, and secures them with dissolvable plates. Surgery takes 4–6 hours; transfusion is often needed. Most children spend one night in the ICU and 3–5 days in hospital. Reshaping is visible immediately; helmet therapy is generally not required.
First 2 weeks at home
Significant facial swelling is normal — peaking around day 2 and decreasing through the first week. A child’s eyes may briefly swell shut for 2–3 days; this resolves on its own. Surgical drains, if placed, are removed in the first few days; antibiotic ointment is applied to the incision line for 7–10 days.
1, 6 & 12 months
The first follow–up at one month checks the incision site. Visits at six and twelve months review skull growth and overall recovery. Babies in helmet therapy are seen frequently at the orthotist’s clinic for adjustments as their head grows.
Through early childhood
Most children with single–suture craniosynostosis go on to lead typical lives. Pediatric ophthalmology may use non–invasive imaging to monitor for any signs of raised intracranial pressure, and developmental screenings catch any subtle delays early. A small number of children may need a second procedure; the rest are followed with routine pediatric care.
Books for kids & families
Picture book · ages 4 — 8
A picture book for children navigating cranial surgery and the recovery that follows. Written by the foundation’s founder — herself a craniosynostosis patient — the book translates the experience of cranial reconstruction into a story a young child can recognize as their own.
Distributed at no cost to families through partner clinics and craniofacial programs.
Patient guide · ages 5 — 12
What to expect on team-clinic day, written and illustrated by a Duke Cleft and Craniofacial Clinic patient. Violet has been a patient since she was adopted from China at 17 months, and was 9 when she brought her first hand–folded notebook draft to clinic. Her team helped her publish it.
Thanks to Children’s Miracle Network funding, every child who comes to clinic at Duke receives a copy.
Events
Each summer we gather families from our cleft and craniosynostosis clinics for an afternoon outside the hospital. Below: what is coming, and what just was.
June 2026
Families from our cleft and craniosynostosis clinics will gather for an afternoon at the Madison Mallards. Children spend the day in the Backyard outfield with crafts, games, and new friends; parents settle in to watch the game. Offered free to families in partnership with American Family Children’s Hospital.
Save the date — details and RSVP coming this spring.
June 2025
Last summer’s Cleft and Craniofacial Anomalies Clinic Kids Fun Day brought together patients, families, and the UW Health clinical team for an afternoon outside the hospital. Children, parents, and clinicians spent the day at the Madison Mallards game spreading awareness of craniofacial differences.
Hosted with American Family Children’s Hospital and UW Health Kids.
For most of my childhood, I assumed that the part of my story worth telling was the surgery itself — the long lines on the imaging–room floor, the sterile drape, the count backwards from ten. I assumed the scar was the headline.
It wasn’t. The headline, I have come to believe, is what happens around medicine. The hours families spend in waiting rooms parsing what a surgeon meant. The phone calls placed to nurse lines because no one is sure which sensation is healing and which is alarm. The pamphlets handed to parents whose first language isn’t medical English. The recoveries spent reaching for words that don’t exist yet.
I underwent reconstruction at five months old for coronal craniosynostosis, and again in high school. My family had health literacy, proximity to major hospitals, and a physician in the family. We could read the pamphlets. We could ask the questions. And still, much of medicine remained difficult to interpret — difficult to know which sensations marked healing and which warranted a phone call back to the surgical team.
Only later did I understand how much of that was a privilege.
For families without a physician at the kitchen table, the gap is not metaphorical. It determines whether a child is brought to follow-up, whether a parent recognizes a complication, whether a family arrives at surgery prepared or in the dark.
A Child’s Face Foundation began with a question, asked over and over again at clinic visits and parent gatherings: what comes next? Families could describe their child’s diagnosis with remarkable precision. They struggled, however, to articulate the next step — when to schedule follow-ups, how to prepare for surgery, which specialist to see and when. The gap was not in the science. It was in the translation.
Translation, I have come to believe, is care. A timeline that makes sense without a glossary is care. A children’s book that lets a five–year–old see herself in her own surgery is care. A community of families willing to say we have been there too is care. None of it replaces the surgeon, the speech–language pathologist, or the orthodontist. It accompanies them.
This is the work this foundation tries to do. It is small, and slow, and built one family at a time. I was once the child waking from anesthesia. I am now in a position to help make sure the next family waking with her finds the path already lit, already steadied, already accompanied.
Contact
If you are a family looking for resources, a clinician interested in distributing the books, or a partner exploring collaboration, we would love to hear from you.
hello@achildsface.org