Choosing the right craniofacial team that is right for your child can be a truly overwhelming task. There are a number of people and sources (doctors, nurses, friends, family, the internet and social media portals, etc.) that can potentially refer you to a craniofacial team or independent surgeon, craniofacial trained or not. Many of the craniofacial diagnoses, especially cleft lip and palate, require close follow-up and a number of procedures over many years, often through 18 years of age. This decision is very different from choosing a surgeon to repair a hernia, fix a broken bone, or take out a diseased appendix. Chances are the decision you make today will greatly impact your child’s future and will be the start of a relationship that will endure into your child’s early adulthood. Learn more about us, the Craniofacial Team of Texas (CTOT), and our care philosophy.
How do I actually compare surgical results of the Craniofacial Team of Texas to others?
How does a parent make a good decision?
One of the major fundamental problems with healthcare in the United States (and across the globe) is that there really is not any standard for outcomes reporting for each diagnosis. The US system prioritizes access to care over the outcomes achieved by doctors and hospitals. The patient’s insurance provider tells them which doctors, hospitals, labs, and imaging centers they can go to, not how good they are. Many patients are surprised to find out that medical insurance carriers pay good doctors and hospitals the same as bad ones and basically spend no time discerning whether doctors are good or bad. After all, the more doctors in the “insurance network”, the more access and the more leverage they have in driving provider pay down. Since access to care is the priority, the system does not help or even encourage providers to report their outcomes, nor does it help fund the cost of reporting outcomes. While good outcomes are very important to patients, it just has not been a priority to insurance companies and the government. These are the major payors in today’s system, and as agents for patients, they have become the true customers of providers and facilities. In the end, patients really don’t have any data to compare one doctor, hospital, team with another (see section on Outcomes).
Additionally, and unfortunately, the cost of care is totally concealed by PPO insurance networks and hospitals, as well. In fact, the big insurance carriers even prevent your own employer from seeing how much care costs on an individual diagnosis level. So, patients and employers have no data available to determine either quality or cost…value of care. Patients are only able to use several proxies for quality care like focus/experience on a disease; time in practice; opinions of other professionals; friends and family; social media; bedside manner, etc. One additional unique feature of craniofacial surgery is that it is a very externally visual specialty. So, "Before and After Photos", i.e. preoperative and postoperative photos, can be seen in our Craniofacial Photo Gallery of patients with similar diagnoses to yours which can offer some insight into the quality of care provided by a specific team. At this time, these photos may actually be the best proxy for quality that a team has to offer. Please realize that despite good intentions, there is clearly a bias even in our own photo gallery. Make sure you read the educational pages as well to get a more complete idea about what can go right and what can go wrong.
Over the years, parents have come in to meet our team, and we often hear similar questions, so one way to further expand on this question, “How do I decide which team is best for my child?”, is to review the questions listed below and give you our answers and observations.
Craniofacial Team of Texas – 40 Years of Collective Experience
How much experience does your team/surgeon have in treating my child’s disorder?
The members of the Craniofacial Team of Texas have been working together for just about a decade. Collectively, we have over 40 years of experience working, but more importantly it is ten solid years working directly with one another as a team, focusing our entire clinical effort on treating cleft and craniofacial diagnoses. This last part is particularly important. The members of the team are singularly focused on craniofacial disease and microsurgery. We don’t meddle in other areas of medicine or cosmetic surgery “to fund” our craniofacial practice. We practice craniofacial medicine every day, all day, and have been for many years.
Members of our team were often the first to perform many of the craniofacial procedures in the Central Texas region. Dr. Kelley organized and recruited a team to establish the first truly multidisciplinary, ACPA accredited team (see ACPA accreditation) in Central Texas more than a decade ago. Dr. Kelley and team performed the first neonatal mandible distraction; the first monobloc; the first team based cleft protocol employing nasoalveolar molding (NAM;) first to perform a primary Furlow palatoplasty to reduce secondary speech surgery and fistulas; first to institute craniosynostosis diagnosis, treatment, and surveillance protocols; first to employ distraction osteogenesis to craniosynostosis and conditions that affect the skull; first nationally to employ virtual planning technology and CAD/CAM 3-D printing to perform free tissue transfer to improve the outcomes in complex craniofacial disorders; first to bring microsurgery to craniofacial surgery in Central Texas; first to remove complex craniofacial tumors in children in the Central Texas region, just to name a few. Dr. Da Silveira was the first to develop a NAM protocol that could be provided to all children in Central Texas (especially Medicaid) and is the most accomplished surgical orthodontist in Central Texas, managing well over 30 complex surgical jaw cases per year. She is the only formally trained craniofacial orthodontist in the Central Texas region and one of only a few in the entire state of Texas. Ashley Bubba is the only formally cleft-trained speech pathologist in Central Texas. She is the first speech pathologist in the region to independently perform endoscopic speech evaluations for the evaluation of VPI.
Members of the Craniofacial Team of Texas have not only contributed to the standard of care in Central Texas, they have set it at a level that rivals the best care available in the nation. Members of the Craniofacial Team of Texas have treated hundreds, if not thousands of patients with common craniofacial conditions, together as a team. (Please refer to each specialist' bio to learn more). We are experts in the care of children with craniofacial disorders and bite disorders; that’s what we do!
Collaborative Team Care – Coordinated and Efficient
Is my child going to have access to all the specialists that they will need?
The Craniofacial Team of Texas strongly believes and adheres to the principles of multidisciplinary care established by the American Cleft Palate-Craniofacial Society. There are several major benefits of multidisciplinary care to your child. First, as a very functionally complex region of the body, the craniofacial region requires expertise in these various functions to ensure that the highest standard of care is provided. Additionally, the multidisciplinary structure creates a culture and environment of checks and balances to ensure high quality of care is provided to each and every patient, every time. Multidisciplinary care provided in a way that affords the patient access to all the providers needed at every visit greatly reduces the burden of disease imparted on the family. By having the providers come together for the patient instead of the patient having to run around to all the providers, patients and their families have to spend much less time dealing with their medical care, and care is coordinated and efficient. Lastly, communication amongst the various specialists is maximized when the providers spend a significant amount of time working together. Communication is the cornerstone of high quality care.
Ask every surgeon or team you encounter if they have all the specialists organized together in one place. And ask how long they have been working together.
Advanced Specialty Training for all CTOT Team Doctors
Do your specialists/surgeons have specific training to appropriately care for my child’s craniofacial condition?
The specialties involved in the care of craniofacial patients include Craniofacial Surgeons, Otorhinolaryngologists, Speech Pathologists, Craniofacial Orthodontics, Pediatric Neurosurgery, Pediatric Dentistry, Nursing, Physician Assistants, Nurse Practitioners, Genetics, and Craniofacial Pediatrics. While all specialists are equally important to your child’s care, there is only one nationally organized training program whose focus is Craniofacial Medicine, that is the Craniofacial Surgery Fellowship. The American College of Graduate Medical Education (ACGME) is the body which governs educational standards for post-graduate medical education. The ACGME has established standards for successful completion of craniofacial training. Since the inception of CF training and still today in the United States, the only path to completion of an ACGME-structured program in the United States is through successful completion of an ACGME-approved Plastic Surgery Residency. So, the formal training order for a US trained craniofacial surgeon is Medical School, then Plastic Surgery Residency, then Craniofacial Fellowship.
You may encounter many specialists who claim they have craniofacial training, citing exposure to craniofacial cases at some point in their training path. This, in no way, is equal to completion of a year of focused craniofacial training under the direction of an accomplished craniofacial surgeon(s) in a US Craniofacial Fellowship organized around the ACGME core curriculum. The American Society of Craniofacial Surgery (ASCFS) governs the match process for all plastic surgery residency graduates who wish to pursue formal training in craniofacial surgery. Unfortunately, despite the attempt of ASCFS to unify the curriculum for craniofacial surgery training, not all fellowships are equal in their experience and focus. Some fellowships spend a significant amount of their focus on cosmetic surgery or other areas of plastic surgery. It is important that your team’s craniofacial surgeon(s) have complete training to deal with the great diversity of challenges presented by craniofacial patients which can only be achieved by finishing a complete year of training focused on CF patients only.
The Craniofacial Team of Texas has a number of specialists that have training well beyond the standard in their respective fields around craniofacial medicine. Ashley Bubba, our speech pathologist, has craniofacial specific training; Adriana Da Silveira, our craniofacial orthodontist, has craniofacial specific training from University of Illinois-Chicago; Patrick Kelley, our craniofacial surgeon, completed his fellowship at the University of Washington/Seattle Children’s Hospital program under the direction of Joe Gruss, MD and Richard Hopper, MD, two of the most accomplished craniofacial surgeons since the creation of the specialty just over 30 years ago. These are some of the most highly rated programs in the country.
(See bios for more details about each specialists' training, experience, and focus)
Questions to Ask Your Craniofacial Surgeon
- Ask every surgeon and team you encounter if their members have had focused training in craniofacial conditions and if the team’s craniofacial surgeon has completed an ASCFS approved fellowship which adheres to the standards of the ACGME core curriculum.
- Ask your surgeon how many of these types of patients or procedures he/she has treated as an independent surgeon? Ask your surgeon, what are their results? How do those results compare with the results of others in the community or nation?
- If your surgeon recommends surgery, ask, “are there any alternatives?”, “are there any less invasive approaches that you or others provide that yield similar results?”
Can I see your surgical results?
While photos are not a true depiction of the result your child will experience because of the complex biological nature of each individual and healing, they are definitely an indication of a general level of experience that providers have with a specific diagnosis. Refer to our Craniofacial Photo Gallery that members of the Craniofacial Team of Texas have achieved over the past decade from their work right here in Austin, TX. While providers may not be able to show you the results of specific and rare diagnoses because of patient confidentiality (HIPPA) and/or the uniqueness of certain diagnoses, they should be able to indicate roughly how many similar patients they have treated.
Regularly Scheduled Patient Care Conferences
Does your team meet regularly to review my child’s condition?
High quality outcomes require coordination of all your specialists’ efforts and focus. It requires a team approach. They have to be on the same page, working together, and with the same goals, and at the same time. The only way to achieve this is for all your child’s specialists to meet in real time about your child. The Craniofacial Team of Texas meets about each patient in regularly scheduled and structured patient care conferences to ensure that care is not only appropriate, but it is timed correctly, coordinated to eliminate undue burden to the patient/family, and correctly organized to put highest priorities first.
Care conferences are the backbone high quality, multidisciplinary care.
Ask every surgeon and team you encounter if they have regularly scheduled care conferences with all the necessary specialists together where your child’s care is the focus of discussion.
Why You Should Choose the Craniofacial Team of Texas
My pediatrician, neonatologist, or obstetrician referred me to another provider, not on the Craniofacial Team of Texas. I like that provider a lot and I trust what they are saying. Why would I change to Craniofacial Team of Texas?
Physician referrals are a very important part of finding good medical care (especially in the absence of standard outcomes reporting), and physician advise/referrals should always be considered relevant. The reality, though, is that the majority of the above providers probably only see a few babies in their entire career with craniofacial disorders. Collectively, the full range of these disorders including birth defects, trauma, and tumors occur relatively commonly, but individually they are very rare. In fact, most pediatric primary care doctors and obstetricians trained in centers where craniofacial teams and surgeons were not present; and often, they had no exposure to even plastic and reconstructive surgery training programs. Fewer than 30 craniofacial surgeons are trained every year in the US. After twelve years in the Central Texas region, we still encounter a great deal of confusion about where patients should go or who our patients should see first, and still, unfortunately, a great deal of late or missed diagnoses.
Additionally, Austin is a very rapidly growing area. Not only are there a great deal of new families, there are a great deal of new doctors to the region. They may not have had a craniofacial patient or even know who the craniofacial surgeons and teams are in the region yet.
Your Right to Choose the Right Craniofacial Team
Lastly, there has a been a trend in the US that has greatly influenced how physicians refer patients. Over the last decade, a number of physicians have become employed by or directly contracted with hospital systems. There is a lot of pressure by the hospital systems on these physicians to keep referrals within their system or to refer to physicians that practice in their system almost exclusively. More patients in the system, especially complex diagnoses like craniofacial, means significant revenue to the hospital system’s bottom line. The primary reason that the hospitals employ doctors is to secure their referrals. Now if a system is very mature like a Mayo Clinic or Cleveland Clinic for hearts, this can be very efficient for patients. You get in to see a true expert right away. But in less mature systems, “keeping a patient in the system” may mean sending them to a lower quality provider. This is often not as intentional as it may seem. As busy as primary care doctors are these days, if they can find a doctor that will “take care of the problem” and there is pressure to send patients to a specific provider, that is really all the primary care doctor has time for.
Certain hospital-based physician services in this country (ER, anesthesia, neonatology, critical care, maternal-fetal medicine) are now really only provided by a few big corporations. This corporate relationship can have a significant impact on referral patterns of physicians. The relationship between the corporate brass on the neonatology side and the hospital side greatly influence how patients are treated and where these doctors refer. This is not always bad. Some of the neonatology corporations have been very proactive in collecting data about births, birth defects, and improving protocols that help save babies lives. The corporate influence on the practice of medicine is real, though. And profits are king, for sure. The vast majority of physicians do an extremely good job of minimizing the influence, and act as a true fiduciary of their patients. Patients should just be aware that these influences exist and realize that a physician referral is just one piece of information; patients still need to do their homework and decide for themselves. As mentioned before, craniofacial diagnoses are very complicated and often require years to address completely. Early, accurate diagnosis and treatment are paramount to maximizing a child’s potential.
Please read the section on Craniofacial Surgical Outcomes for more information on evaluating provider quality.
If you would like more information about any craniofacial anomaly, please contact the Craniofacial Team of Texas by calling 512-377-1142 or toll free 877-612-7069 to schedule an appointment or complete an online appointment request.