How to choose a doctor for your child

Finding the right doctor is an extremely important decision, but how can a parent know whom they can trust to take care of their child? The first step is to take a deep breath and take some time to do your homework; just because your child has been diagnosed with a craniofacial problem doesn’t mean that surgery must be done immediately. It is important for parents to learn as much as they can about the diagnosis that they have been given, and what the various treatment options are, before proceeding with any operation. One of the best ways to do this is to get a second, or even a third opinion. This section is written for those parents who are motivated to get the very best care for their child. Following this section are some questions that parents might wish to ask their child’s doctors.

To begin with, what type of kind of doctor should a parent seek out for a second opinion?  Although this obviously depends upon the specific problem, if it is a craniofacial problem, then in general it is a craniofacial surgeon who directs the care for almost all the various craniofacial issues. Sometimes parents are first referred to a pediatric neurosurgeon by their pediatrician, especially if there is some question about craniosynostosis. Typically, after seeing this neurosurgeon, families are then referred on to the craniofacial surgeon, who often is the one who determines the specific treatment plan. It can be confusing for parents which doctor does what. The best care is provided when these two specialists work together in surgery. The craniofacial surgeon is the architect who designs the operation, the pediatric neurosurgeon safely removes the sections of bone as indicated by the craniofacial surgeon, and then it is the craniofacial surgeon who reassembles the skull into the desired shape.

Typically, if there is some question about a child having any kind of craniofacial birth defect what generally happens is that a parent is referred to the nearest surgeon (who the parent is told “has an excellent reputation”) and then the family goes ahead with the proposed operation. Even though this surgeon is supposed to be really good, and may work in a well-respected major medical center, what are the chances that this doctor is actually just an average surgeon? Surprisingly, the answer is about a 95% chance. Doctors are no different than teachers, auto mechanics, carpenters, etc.; they run the gamut from not so good to superb. Interestingly, surveys show that almost all people consider themselves to be above average drivers. Of course, this can’t be true. Yes, some of us are actually are better than average drivers, but most all of us are just average - we just don’t know it. The same is true for doctors. How often do you hear that a doctor is “one of the best?” As it turns out the majority of these “top doctors” have to be, just average. The Bell curve can describe a normal distribution of just about anything. It tells us that about 2% of the time, something is significantly below average, 96% of the time, it is about average, and 2% of the time something is significantly above average. So is average really so bad? Maybe not. The question is: how important is it to have one of the best doctors treat your child? I believe that it is extremely important. Think of it this way, it can be really frustrating to have to take your car back to the mechanic because it was never fixed right in the first place, but no one wants their child to have to go back for a second, or even third unnecessary operation, because the first one was not done as well as it should have been done, or because it was done at the wrong time (usually at too young an age). Imagine having your child live the rest of his or her life with a result that is just not as good as it could have been.

For those parents who want only the very best care for their child and are willing to do whatever this takes, where should they go? If only the top 2% of all surgeons can be the very best in their field, this means that there is over a 98% chance that a family’s local surgeon isn’t one of them. How can parents, without any medical background, figure out who is best? Probably the two most important traits to look for in any doctor are: experience and judgment. If you want the best, find that doctor who has treated more patients with your child’s condition than anyone else. In general, the greater the experience a surgeon has, the less of a chance your child will suffer a complication, and the better the chance that your child will get a great result. Assessing judgment is somewhat harder. Probably the best way to do this is to get more than one opinion, and see which doctor is best at clearly answering all your questions. The more the answers make sense to you, the more likely you have a doctor with good judgment. One more important tip: don’t be afraid to ask questions! Studies show that most parents hesitate to ask their surgeon questions either because their surgeon doesn’t give them the chance, or because they are afraid that they might make their doctors mad. No need to worry, any surgeon who gets mad at a parent asking tough questions that might seem to be challenging them, are really helping parents realize it’s time for another opinion. Below are some tips to help parents find the best care for their child, followed by a list of potential questions to ask (don’t forget to write your questions down before going in to talk with your doctor):

  • Going to a top hospital or medical center doesn’t ensure that all the doctors working there are going to be the best. It is most likely that these top medical centers provide excellent care for heart disease and general medical problems, but not for something as small and specific as pediatric craniofacial surgery. Parents need to focus on who the actual doctors will be caring for their child. A great university doesn’t take care of a patient, it is the specific doctor. Once again, get more than one opinion.

  • Has your doctor been named on the “Top Docs” by your local magazine? If so, consider going elsewhere. Okay, I must disclose that my name routinely appears on the list of “Top Docs” in our local magazine, but let me explain to you how this works. It is true that some physicians get named to this list by their peers, but if you look carefully, almost all the “Top Docs” will have their pictures in an ad somewhere in the magazine. I have noticed that all the physicians who buy ads end up listed as a “Top Doc.” I have been invited to buy an ad (I never have) in our local magazine. A publisher once told me that these issues of Top Docs make the most money for magazines. If your doc has a picture in the magazine, he or she almost certainly paid for it. Why would a doc pay for advertising? Not busy enough? How come?

  • Search the Internet for information on your local doctor. Does this surgeon seem to be more focused on cosmetic surgery or craniofacial surgery?  Does your doctor have a web site that seems to provide more information on cosmetic surgery? How much time does your doctor devote to reconstructive work, and how much time is spent doing cosmetic procedures? Has your doctor published articles on your child’s condition, or in other related areas? You can check this by typing in your doctor’s last name, space, and first initial in the search box at: www.ncbi.nlm.nih.gov/pubmed/, or ask your doctor for a list of his or her publications. This will help you to figure out if your doctor has a focused interest in your child’s problem, or is actually better at treating conditions that are different from what your child has. Parents should expect a different result after an operation performed by a surgeon who says: “yes, this problem is my special interest,” than from a surgeon who says: “yes, I know how to fix this problem.”
  • Prepare a list of questions in advance (see below for some suggestions), and then make sure that you get them all answered.  If you feel rushed during your appointment and you didn’t have enough time with your doctor, then get another opinion. Doctors who rush through an office visit are more likely to rush through the planning phase of your child’s operation, rush through the surgery, and only briefly follow your child afterwards, all leading to a poorer result. It is okay to ask yourself: “what does this doctor have to do that is more important than treating my child?”
  • How well were your questions answered?  Doctors who do not directly answer questions or speak in generalities, may simply not have sufficient experience with your child’s problem.  On the other hand, if your questions are clearly answered and explained in a way that makes good sense to you, then it is more likely that this doctor has the necessary experience and judgment to treat your child.
  • Check to see if your doctor’s office staff would be willing to ask other families with children who have the same problem to contact you and share their experiences.  Go to Internet chat rooms or forums that focus on your child’s problem.  Have other families had positive experiences with this doctor, or are there other doctors who seem to be doing more of these types of operations?  Keep in mind that many families will believe their child’s operation was a complete success just because their child survived the operation without a complication. It can actually take years to determine how good the final result actually was.
  • Finally, listen to your gut feelings.  A “prima donna” attitude in a doctor can be a sign of insecurity (perhaps about their own ability). Any doctor who discourages second opinions, or acts insulted if you question the proposed treatment, is most likely the wrong doctor.  Does your doctor seem to truly care about your child? 

 
Here are some sample questions to consider:

 

 1.  What is the best time (or age) to perform the surgery that has been recommended?  How long can the operation be safely delayed, and what problems can happen if we delay?

This question will help you to understand the urgency of your child’s condition and how much time you have to research your options.  It is important to realize that when children are still growing, sometimes waiting a little longer to operate can avoid the need for second operation later in life.  If your surgeon is recommending immediate surgery, try to understand the cause for urgency and consider a quick second opinion. Is it just that the doctor has an opening next week so “let’s do it then,” or does your child truly have a life threatening condition that requires immediate attention? Just because an operation is scheduled for your child, it doesn’t always mean that it has to be done exactly at that time.

 2.  Besides the operation that you propose, are other doctors doing different operations for my child’s condition?  If so, what are they, and why do you not recommend these operations?

This question may help you to get a sense of your doctor’s judgment. Although studies show that the risks of serious complication are less likely with the most experienced surgeons, experience isn’t everything.  A doctor’s judgment is also very important, and judgment doesn’t always go hand in hand with experience.  For most problems there is often more than one solution. The very best doctors will recommend the smallest possible operation, that will provide the greatest benefit, with the least risk. “Less is best.”

 3.  Do you get to personally choose the anesthesiologist who will care for my child, or do you work with a group of anesthesiologists that assigns you an anesthesiologist when you operate?

This question gives parents a sense of how much control their doctor has in putting together the team that will care for their child. The difference between an anesthesiologist who is very experienced with craniofacial surgery, and one with less experience could be very significant, especially if a problem arises during the operation. Normally parents first speak with their child’s anesthesiologist over the telephone the night before the operation, and do not actually meet this doctor in person until the day of surgery. Ideally, your surgeon has the ability to personally select the anesthesiologist; this way, the doctor who puts your child to sleep is not left up to chance.

 4.  Will students, interns, residents and fellows be looking after my child?  Can you define their roles in my child’s care?

Parents certainly don’t want their surgeon insulated from their child, with doctors-in-training making important medical decisions on their own.  If residents and fellows are going to be involved, then consider planning surgery in the spring, as far from July 1 as possible (that is when all new interns, residents, and fellows start the year).  It is okay to tell your surgeon that you expect him or her to be present for the entire operation, and to be actually performing (and not delegating) all the critical parts of the surgery (which is most of it!).Parents would be surprised how often surgeons leave their fellows and residents alone in the operating room with a child, so that they can do another operation in a different room. Ask your surgeon if they will be doing this with your child, or will they be there the entire time.

 5.  Besides you, who are the other top two or three surgeons for treating my child’s condition?

If you ask this question to enough surgeons, you will probably start hearing one or two of the same names over and over.  Seek their opinions and see if their treatment recommendations are similar to those that you have already heard. If you want your child to get the best, go to the best.

 

Some Final Thoughts

Take the time to “do your homework” and don’t feel rushed; there are almost no true craniofacial emergencies, and almost all operations can be safely delayed for a couple of weeks in order to allow you to “get your bearings.” If you are the type of parent who feels like there is nothing more important in the world than your own child, and you are able to travel to get another opinion, then go get the best care you can find. Craniofacial problems are unusual enough that most surgeons just don’t have the opportunity to treat these conditions all that often. There is a difference between going to a good doctor and a great doctor. Don’t let insurance companies tell you that you must stay home or “in-network;” it may take a lot of work but persistent parents, who are willing to put in the extra effort, almost always are successful at getting their children the absolute best care; all they have to do is try. Finally, never be shy about telling your doctor that in addition to seeking the very best care, you are also seeking care that will be affordable to you and your family. 

The most valuable second opinions require visiting another craniofacial surgeon, who can personally examine your child and then sit down with you for a long discussion. However, Dr. Fearon is willing to answer any general questions by e-mail: cranio700@gmail.com.  It is recommended that you include your child’s last name (this is how correspondence is filed and kept). E-mail responses typically take less than 10 days and are kept confidential as can best be done using the Internet. If parents do not want to send confidential information by e-mail, Dr. Fearon will also review material sent my regular mail or courier service.