Monday, June 6, 2011

Choosing a craniofacial team

After we had Aiden, and after the shock began to wear off, we knew we had to buckle down and make some pretty important decisions. Decisions unlike the ones we made after our first son was born - what outfit to bring him home in, which blanket to swaddle him in. As we placed Aiden in his infant carrier and were discharged from the NICU with an apnea monitor in tow, the decisions we faced were not anything we could have prepared for. The nursing staff went over the list of specialists to see and appointments that had been scheduled for Aiden on our behalf, highlighting the date and time of each one, and sent us on our way. Totally unprepared.

I sorted through the list and turned to Google to determine just exactly what role these doctors would play in Aiden's life - neurologist, orthopedic surgeon, pulmonologist, ophthalmologist - words I had only heard in episodes of Grey's Anatomy prior to this day. My mind raced with questions.

We passively attended some of the appointments on that list, naively assuming those were our only options as decided by the capable medical professionals at the hospital where Aiden was born. I'm not sure at exactly what point we realized that in fact WE were going to call the shots as Aiden's parents, but it was at that time that we began to feel empowered. We spent the next 8 months hand-picking the very important team of doctors that would be best suited to help our little guy thrive.

As we navigated this intense and often scary period of time, here are some of the things we found extremely helpful in making our decision:

Arriving in Chicago
  1. Do your own research. While I will admit that immediately turning to the internet the first few days was a little overwhelming, even depressing, we quickly learned that much of the information about Aiden's condition was either outdated, incorrect, or both. Even so, it was during those initial Google searches that we began to familiarize ourselves with some of the terminology that would become part of our everyday vocabulary. Through our research, we were able to develop a pretty extensive list of questions for each of the specialists and we also came across a bit more educated, which I felt made them take us more seriously.

  2. Be prepared for every appointment. Bring your list of questions, a recording device (even your phone might have recording capabilities), a notebook and pen, any previous medical records or scans and an advocating attitude. We went into our first few appointments confused and passive. But we gained some perspective with each, and began developing our arsenal. Once we had some confidence going into the appointments it became much more clear who was a good fit and who wasn't.

    For instance, our visit to the local plastic surgeon that was recommended to us was a clear flop from the beginning. We begrudgingly looked past the posters of perfectly constructed bosoms that plastered the walls in the waiting room, attempting to keep an open mind. But when he politely cut me off at about question #5 of 30 saying "If you have any more questions, just let me know" as he exited abruptly, we politely cut him off our list of contenders. If he couldn't even spend more than 20 minutes with us discussing the delicate nature of a necessary skull surgery for my baby, we didn't feel comfortable that he would include us in the process going forward. Clearly, his best work was advertised on the waiting room walls.

    Taking careful notes and having conversations recorded made it easier to recall our initial impressions and the proposed treatment plan of each of the many doctors we visited. We wouldn't have needed to be reminded why we crossed Dr. "Boob-man" off our list, but some of the others blurred more easily in our minds when we sat down to discuss how we felt about them. In addition, be sure to check out CCA's 1-Sheet Overview: 'Parent's: You are the Official Care Manager' for more tips on becoming your child's advocate and preparing for appointments.

  3. Enlist a support system to tag along. I was fortunate that my husband was able to attend all of our early doctor's appointments as we were choosing Aiden's team. I couldn't have done it on my own. There were times when my emotions got the best of me and I literally had to lean on him for support and vice versa. The process is exhausting and I always felt like I was forgetting something. Having someone there to pick you up after hearing some frightening statistics or unsettling description of a certain procedure was so important. Even if you have to ask a parent, a friend or a co-worker to go along with you for support, DO IT! It can never hurt to have an extra set of ears absorbing all the information and helping you sort it out afterwards.
  4. Get 2nd, 3rd, even 4th opinions. As I said before, once we realized that we had the freedom to actively choose our craniofacial team, we definitely took to it. No expense was too great - we would travel far and wide to find the best of the best. We started locally with the pre-made appointments from the NICU team, then headed to Chicago where we had heard some wonderful things about the team at RUSH. We were pleased with the craniofacial doctors, but our minds and hearts were crushed when we met with the plastic surgeon they referred us to. We had the first appointment of the day with Dr. "Disney" (I'll explain), however he kept us waiting for over an hour as he finished his morning swim (so we were told by his nurse). He barely looked at Aiden directly, threw the x-rays that we brought with us from a different doctor onto the light board and within 30 seconds determined that Aiden would only have 3 fingers and a thumb. We were devastated. But at that point, we hadn't heard any different so I had to assume that this information was Aiden's reality. He offered no real explanation, so as we prodded him with questions, he attempted to calm us down by offering this little happy nugget: "It's okay, Mickey Mouse only had 3 fingers too"! Thoroughly disgusted that he had just compared our beautiful baby boy to a fictional rodent, we acknowledged the fact this 2nd opinion was going to result in a 3rd.

  5. Trust your gut. Our next stop was Dallas and many of you know the exceptional team(s) available there. Feeling very discouraged, we tried to keep our spirits up and prayed we would find the best team for Aiden. As we began our appointment with our 3rd opinion, he took us to his office rather than a cold, white examining room. He asked to hold Aiden - something nobody else had done. He took the time to answer our questions without making us feel rushed. He was warm and sensitive to our fragile and exhausted emotions. Most of all, he seemed to know more than any of the others combined and explained it in a way that was on our level - not over our heads with crazy medical terms , or dumbed down as though we couldn't handle it. Ricky and I left that appointment, walked out the door to grab the elevator, and burst into tears. Our gut was telling us without a doubt that this was it. We knew we had our guy and we are still as happy with our decision now as we were that day.
En route to Dallas for Aiden's 1st surgery!
There are so many other factors that make choosing a craniofacial team so complex: insurance battles, travel issues, not knowing what course of treatment makes the most sense. All of those make it an extremely difficult process. 

With that said, I hope that if you are just starting on this journey, you are able to find some of the above helpful. And if you're further along on the journey, we'd love to add some of your advice and/or suggestions to this list. Leave a comment below!


  1. Really good post, Taryn! Thanks!

  2. Taryn, your post was wonderful!! So many things you described fit exactly what we've encountered. Under trust your gut I assume you are talking about Dr. Fearon!! What you described about his office and bed side manner is dead on with what we experienced with him. He is so wonderful and we are so grateful to have such an amazing doctor for our son!! We are fortunate enough to live in Dallas and not have to travel to see him.

    All the best in the future!!


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