You stare at that ultrasound, taking in the news that your baby has a cleft lip and/or palate.

You’re referred to a specialist to confirm that diagnosis.

You see the specialist, baby’s cleft is confirmed.

You don’t know how to feel or what questions to ask.

It all happens so fast.

You’re referred to your local cleft team.

You’re given information on bottles, feeding methods, surgeries, and surgeons.

You’re supposed to choose a surgeon.

But how?

If you’re like many cleft parents, the events between your child’s cleft diagnosis and selecting a surgeon happens in a whirlwind of uncertainty. An enormous amount of information is given in a short period of time with no easy way to process through your questions and concerns.

You’ve been encouraged to find a surgeon for your child, but haven’t been given any helpful information on how to narrow down the possibilities and select one that is correct for your family.

Do you go with an ENT or a plastic surgeon?

Do you opt for a staged palate repair or a complete palate repair?

Do you like the orthodontist that works with the surgeon?

Does your surgeon operate with a team of specialists (dentist, ENT, audiologist, speech therapist, etc.)? Or will you have to find those specialists on your own?

You weigh the options, going through lists of names or joining Facebook support groups to ask about the pros and cons of each physician.

You consider insurance coverage, driving distance, patient reviews, surgical specialties, and feedback from other cleft parents.

You set up interviews with your top choices, asking them questions about their methods but not fully understanding the risks and benefits involved with each procedure or operation.

How do you know which surgeon is correct for your child and for your family?

There may not be one right answer to that question, but there are some steps you can take to make the decision process a little easier:

 

  • First, decide what specialty you want to go with. Do you want your surgeon to be an ENT or a plastic surgeon? If you prefer a plastic surgeon, do you prefer that they specialize in craniofacial surgery?  If you’re unsure of the differences, do some research. Try talking to parents who have used either specialty, and select surgeons of both fields to interview and ask specific questions about the differences between their specialties.
  • Second, find out who takes your insurance. This will likely narrow down your prospective surgeons to a more reasonable number.
  • Third, visit the surgeons’ websites. What is their focus? Do they do mostly cosmetic surgery? Or do they largely focus on pediatric clefts and craniofacial abnormalities? What do you feel the most comfortable with?
  • Fourth, ask parents for their experiences with the surgeons you’re interested in. Understand that you will receive a lot of varying feedback and try to focus on points that matter the most to you. For example: bedside manner, availability for appointments, how quickly they return phone calls or emails, how they interact with children, etc.
  • Fifth, select 2-3 surgeons to interview, preferably before your baby is born. Gather as much information as you can about their methods, which hospitals they operate in, how they approach pain management, what their care plan trajectory would be for your child, etc.  How do they treat and respond to you? Do you feel comfortable with them and in their office? Do you trust them and feel confident in what they’re telling you?

 

When it finally comes time to make that decision, I believe that instinct and intuition play a part as well. Deciding who you feel the most comfortable with, who your family “clicks” with the most – these are important factors in selecting your child’s surgeon. You will be spending a lot of time with this provider over the next several years. You want to not only be confident in their abilities, but you also want to trust them with your child and with your family.

When you do make that decision, know that it is acceptable to change your mind down the road if needed. After your child is born and you begin seeing your surgeon for preoperative appointments, you may come to realize that their methods or approach no longer feel right for your child.

If you have concerns or question your decision, seek out a second opinion. Continue your search until you do find someone who meets your needs and feels right for your family.

Your child is worth it.

My husband and I followed a similar decision-making process when selecting our own surgeon. Before our son was born we decided to go with a plastic surgeon instead of an ENT, we found out which local plastic surgeons took our insurance, and we began reviewing their websites and patient reviews. We selected three and took those names to our local Facebook support group. We quickly decided on one well-known surgeon and set up a consultation with him. After meeting with him we felt confident in our decision and decided to move forward with him as our son’s surgical provider.

After our son was born we scheduled his first preoperative evaluation. The whole experience was stressful – driving through a high-traffic part of town, navigating a busy hospital, and sitting in a busy waiting room before our appointment. I was still adjusting to life with a cleft newborn and the stress of getting to his first appointment was overwhelming.

The appointment itself went well, but my overwhelm increased as I found out that we would repeat these appointments every two weeks until his first surgery, between three and four months later. I left that day feeling defeated and unsure of how we could cope or keep up with that schedule, especially since I had two other children at home who also needed my care and attention.

It was at that point that I listened to the advice of a neighbor and decided to obtain a second opinion. This neighbor wanted us to be aware of other options and to make a decision that best suited our family’s needs.

I visited a different surgeon later that week and immediately felt the difference. The office was calm and easy to locate, the waiting room was quiet and had toys to entertain my other children, and the interaction I had with the surgeon quickly put my concerns at ease. This surgeon had a passion for helping cleft children and I felt his compassion and concern for our son and our family within moments of meeting him.

We still didn’t understand the different operating methods or the pros and cons of each approach, but we trusted this surgeon and felt good about making the change. We would no longer need to have appointments every two weeks, but knew that we could reach out if we had questions or concerns about our son’s care. The location was easier for me to drive to and the appointments were relatively stress-free. But above everything else, we simply felt that it was right. We knew that this new surgeon was a better fit for our family and our needs, and felt at peace with our decision.

There is not one right way to select a surgeon for your cleft child.

Each parent you talk to will have varying opinions about each provider or the methods they use.

You may pick someone but end up switching later.

What is right for someone else’s family may not be right for your family.

And all of these things can make the process of selecting your child’s surgeon a daunting task.

But as you narrow down possibilities and come to a decision, remember that your child is what matters the most. Not what other people say or what other parents suggest – it is about your child. And as their parent, you are their greatest advocate.

It’s ok to be picky or to be concerned. It’s ok to have questions and seek out more information. You are your child’s voice in those early years – you make their decisions, you oversee their care.

So take your time and make the decision that feels right to you.

From a fellow cleft parent,

 

~Jewely P.