Dr. Evans is one of the pediatricians on the Craniofacial team at Seattle Children’s.

How common is cleft lip and palate?

Roughly 1 in 1,000 babies is born with cleft lip and/or palate. It’s one of the most common birth defects in the United States along with congenital heart defects, Down syndrome and spina bifida. The exact cause is often unknown, but researchers believe it’s usually a combination of genetic and other factors, for example, environmental factors.

Does Seattle Children’s mostly see more severe cases?

At Seattle Children’s we care for infants, children and teens with a mix of all different types of clefts, ranging from minor to severe. We cater the care to the individual’s specific cleft-related needs, supporting the whole child and family and working towards the best outcomes possible.

What does a typical treatment plan look like for a cleft lip and palate (minor and major)?

We often meet new babies with a cleft in the first one to two weeks of life to provide feeding support and to initiate lip taping or molding if it is recommended by the team. There may be additional visits in infancy, especially if feeding or nutrition assistance is needed. The first surgery is typically the lip repair at about 6 months of age. If the palate is involved, we assess hearing and provide anticipatory guidance around speech development at 8 to 9 months of age and begin planning for palate surgery, which typically occurs closer to 12 months of age. Ear tubes are often timed with palate surgery, if needed. We reassess speech function at 16 to 18 months of age and then monitor children with clefts annually or guided by their care needs (for example, dental health, hearing needs, speech support, sleep apnea treatment, feeding and growth support, learning needs and mental health support). Starting at about 5 years of age, when a child enters mixed dentition, we work with our craniofacial orthodontist to initiate planning for alveolar bone graft surgery (the goal of a bone graft is to fill in the bony gap in the gumline with bone from the hip to support incoming adult teeth). Bone graft surgery is timed based on a child’s specific dental eruption pattern, usually occurring between 6 and 9 years of age. We monitor dental occlusion over time, and many children and teens with clefts will benefit from orthodontic care, and some will need jaw surgery later in adolescence (16 to 18 years of age) to normalize their bite after their facial bones are done growing. We elicit patient preferences for treatments and surgeries, beginning in early childhood, to empower individuals to become advocates for their needs, hopes and goals. We often follow individuals with clefts through the completion of facial growth, up until 21 years of age or later if needed.

How important is the first surgery?

Everyone on our team would agree that the best chance to have the best outcome is with the primary (or first) surgery — whether it’s the first cleft lip surgery, the first cleft palate surgery or the first bone graft surgery. The first time the procedure is done has a permanent effect on the child’s healing, recovery and outcomes for both the form — meaning the way it looks — and the function, for example, for eating, speaking and chewing. If the first surgery is faulty, even if it’s repaired, it can have lifelong implications on the child’s speech and ability to be understood in addition to how they look.

We often are asked to see children who had surgery elsewhere that resulted in complications and/or needs to be corrected. This appears to be happening more often in recent years, unfortunately.

How many kids with cleft lip and palate do you see?

We are a high-volume center for cleft lip and palate. We see about 1,000 patients each year (7,000 total patient visits) and perform over 300 surgeries.

  • Cleft palate surgery: About 150/yr.
  • Cleft lip surgery: About 90/yr.
  • Alveolar bone graft surgery (later surgery to add bone to the gum line): About 90/yr.

What are your patients’ outcomes?

For our surgeons, pediatric cleft and craniofacial surgery is their focus and what they do all week. That makes a difference, and we see that in our specific outcomes, such as not needing as many secondary or revision surgeries, etc. A recent singular plastic surgeon audit of the last decade revealed low rates of secondary (or redo/revision) surgeries when the primary (initial) cleft surgery was performed at Seattle Children’s:

  • Among 358 infants who underwent cleft lip repair, 0.6% underwent lip revisions (compared to rates of 5% to 60% among large North American centers cited in the literature).
  • Among 224 children who underwent palate surgery, a fistula requiring surgical closure occurred for 0.4% (compared to rates of 4.9% to 8.6% in recent large systematic reviews in the literature) and the rate of speech surgery to treat velopharyngeal insufficiency was 4.4% (compared to accepted rates of 15% to 30% reported in the literature).
  • Among 136 alveolar bone graft surgeries, the success rate was 95% (higher than the more commonly reported 90% in the literature).

We also track select patient care and outcomes through the cleft pathway for standardized care that we created and follow. Through our pathway work, we have reduced the rates of opioid use postoperatively after lip and palate surgeries; have increased our ability to support early return to feeding, weight gain and growth after surgery; and we are now able to reunify 100% of parents with their infants in the recovery room immediately after lip surgery.

What specialists are involved in cleft-related care?

Patients at Seattle Children’s are cared for by a multidisciplinary team of experts: a core group coordinating care (pediatrician, nurse and social worker) and experts guided by the child’s specific needs, including plastic surgeon, otolaryngologist, oral surgeon, speech pathologist, pediatric dentist, orthodontist, audiologist, geneticist, nutritionist and psychologist. Our team’s size and the many layers of specialists make our program unique in our region.

Having multiple surgeons and multiple pediatricians elevates our expertise further, because we really do push each other to keep improving.

Our physical proximity to one another helps as well. All team members work together in one area. If unique needs arise, we can quickly consult, communicate and make a plan for that child to ensure the best outcome possible.

When does it make sense for a child whose cleft is minor to stay closer to home for surgery?

We have seen many cases where the cleft looks minor but has the same issues as those that look more serious. When a child’s cleft is truly minor, they may have a good outcome even if their surgeon isn’t part of a larger, comprehensive team. But we think families are empowered by knowing what their options are. We would encourage them to have a consult with our specialists to hear what we can do for their child, no matter how minor the cleft appears.

What happens if a child with a cleft doesn’t have an experienced, multidisciplinary team?

There can be lifelong impacts on a child’s appearance, function and emotional health.

In a cleft palate surgery, it’s not only important to heal and close the palate but to make the palate muscles functional for eating, breathing, hearing and speech. An experienced team is alert to potential problems and will prevent or treat them in a timely way. They also will make sure families are aware of all the opportunities available to the child as they mature. For example, children with a cleft through their upper jaw/gum line will need a bone graft surgery at 6 to 9 years old. Because their upper jaw is still growing and their permanent teeth are still coming in, they will need a team that is active in their dental and orthodontic care. They can also help with decisions about future jaw surgery to normalize the way the teeth line up and come together after their jaw is done growing.

What should families know about the cleft care at Seattle Children’s?

First, they should know they have a top-tier team with the full range of experts their child needs to have the best outcome possible, working together as a team. And secondly, our philosophy of care centers on the child and family. We treat each patient as a whole child deserving of support beyond just surgery — in terms of their growth, development, communication, behavior and self-confidence. This type of holistic support is unique in cleft-related care in the WAMI (Washington, Montana, Alaska, Idaho) region. And I would want families to know that we aim to reduce the burden of surgery for every child as much as possible by doing the fewest number of the most successful surgeries for each child. This means less stress on the parents and less time away from friends, school, activities, etc., for the child.

What would surprise PCPs about our Cleft Lip and Palate program?

What PCPs probably don’t know is that every child that comes to see us has a craniofacial pediatrician, like me, who’s helping oversee and support their treatment plan throughout childhood — from prenatal times or early infancy or whenever they arrive, through late adolescence and early adulthood — because the face keeps growing and changing. Pediatricians tailor the child’s care plan precisely to them and their family and will often consult the child’s PCP when complex decisions are being made.

Are children involved in the decision-making?

Yes. Because we are thinking about the child as a whole person, we try as much as possible to elicit their input into their care. Obviously we can’t do this when they are a baby or young child. But as they grow into a teen who trusts their care team, they are typically more vocal and engaged in guiding their own care. They can help decide, for example, if there are other surgeries that would be important to them before graduating from our program.

Are patients seen at the hospital campus only?

We see patients at the hospital and our regional clinics in Bellevue, Everett and the Tri-Cities. A child’s first appointment will be at the hospital or in Everett. Surgeries are performed at the hospital and Bellevue clinic.

How do you help families who live far away?

Visits to Seattle Children’s are often anchored to the time-sensitive surgeries that occur, and beyond that, the visits can be flexible and will be dictated by the child’s specific needs. A lot of what we do happens through phone and MyChart and parents sharing updates on feeding and growth and sharing photos of how things are progressing. We offer lip taping and molding before cleft lip surgery, and we have ways of checking in on an infant’s progress that doesn’t require coming to the clinic every week.

If a family wants to get care outside of Seattle Children’s, what should they look for in a surgeon?

There are surgeons in WAMI who offer cleft surgery without it being their primary focus or without being part of a larger team that offers related care (feeding, hearing, speech, development, etc.). We would recommend choosing a surgeon who has specific training in all the different types of cleft surgeries and cleft care and a large volume of patients to indicate their experience and skill.

Outside of Seattle Children’s, there are no surgeons in WAMI who are connected to a program that offers deep expertise in multidisciplinary care throughout the patient’s childhood and into young adulthood.

Is Seattle Children’s involved in cleft lip and palate research?

Yes. This is a field with constant innovation happening. Our team is involved in a spectrum of research studies to learn the causes of cleft lip and palate and develop cutting-edge treatments to deliver even better outcomes for children. Much of our work is funded by the National Institutes of Health (NIH).

  • Dr. Kai Yu uses mouse models and advanced 3-D imaging to understand how the palate forms and how gene mutations disrupt normal development.
  • Dr. Carrie Heike is working on tools that can be used by patients and parents to provide a standard assessment of cleft lip surgery outcomes, in collaboration with researchers at the University of Washington and the University of Illinois at Chicago.
  • Dr. Brent Collett and Dr. Emily Gallagher are studying the early learning skills of children with clefts compared to children without clefts.
  • Dr. Raymond Tse is working to measure how severe a cleft is and how much surgery changes it. He uses 2-D and 3-D imaging to make exact measurements.
  • Dr. Sarah Kinter is studying the impact of differing midface advancement surgical approaches on long-term speech outcomes for older children and adolescents with clefts.
  • Drs. Tse and Kinter and multiple members of the team are also a part of a multicenter comparative effectiveness study of speech and surgical treatments using a Cleft Palate Registry/Research Outcomes Network (CORNET).
  • My research at the Evans Lab studies obstructive sleep apnea in babies with craniofacial conditions including Robin sequence, so that we can help them breathe better and thrive.
  • One of our surgeons is developing a new, more precise type of molding to shape a child’s nose before their lip surgery.

Do you offer free consults for families?

Yes. Families are welcome to have a no-charge consultation with us by phone, before or after their child is born. We set up a 30- to 45-minute meeting that is convenient for families and includes one of our seven craniofacial pediatricians, a nurse and a social worker. We discuss what their child’s care would look like and the support we can give them before the baby is even born to address their expected feeding challenges. We also connect the family with the cleft community. Even before the scheduled consultation, our nurse can support the family with advice over the phone.

If I want to discuss a patient, what’s the best way to reach you?

Call the Provider-to-Provider line any time at 206-987-7777 and ask to speak with a provider on our team. If you have photos of the child’s cleft, that’s really helpful. You can accompany a consult call by sending photos and growth chart data to us at craniofacial.RN@seattlechildrens.org to help us determine which specialist(s) should see them and how soon.

Referrals:

PCPs, MFM providers and OBs, please refer your patient to Craniofacial.

Access:

We will always see new babies with a cleft within 2 weeks. If a child needs a consultation for a possible revision surgery, the wait may be longer, up to a few months. If you feel they need to be seen sooner, please call us to discuss it using the Provider-to-Provider Line (206-987-7777).

Resources from Seattle Children’s

In case you missed it, “Seattle Children’s Uses 3D Printing to Plan Complex Surgeries, Creates Custom Care Model,” June 29, 2021, in On the Pulse.