Choosing My Cleft Team

On the day of my 20 week ultrasound, I was given a sheet of paper, and told to call someone from Primary Children's Hospital. Natalie Lyon was the program coordinator for the Cleft and Craniofacial Center. She would have information for me, and I needed to meet with her to set up a plan for my child's care.  It was not something I wanted to do.  It took a few days to gather the courage to call her, because calling her meant that what I was faced with was going to suddenly get real.

I drove down to Salt Lake, about an hour and a half away, and I sat with Natalie in her office.  She showed me pictures of children with different types of clefts, and we talked about different bottles.  We discussed upcoming procedures, surgeries, and finally, I was given a paper that had an overwhelming list of different doctors who could perform my son's corrective surgery.  I panicked, wondering how on earth I was supposed to blindly decide.  Each doctor had a different method, a different timeline, a different idea on how the cleft could be fixed.  Some did it as soon as possible, some required a lot of work and a lot of time.  Some would leave scars, and others would make sure the scars were minimal, but they were the ones that took the longest.  I didn't know what was best.

I finally ventured onto my Kids with Clefts Utah facebook group, and started reading everyone's posts.  I wondered who had chosen which surgeon, and finally narrowed my choices down to two plastic surgeons:  Dr. Rodney Schmelzer or Dr. Faizi Siddiqi.  I was told I could meet with both, and see which one I clicked with the most, and then I could choose who I wanted to go with.  Dr. Siddiqi was the first doctor I called, and I scheduled my meeting with him, which was about a month away.  Next, I called Dr. Schmelzer's office, and got my first appointment to meet with him in two weeks.

The meeting with Dr. Schmelzer went great.  I liked what he said, and what his credentials were, and more importantly, I loved that he had free team consultations, meaning the Ear, Nose and Throat (ENT), orthodontist, and him all met together with the patient to discuss progress and the next step (as opposed to scheduling these appointments separately, and dealing with the hassle of insurance and ever so precious time).  I ended up canceling my meeting with Dr. Siddiqi, because I knew Dr. Schmelzer was the right fit.  He was so kind as to give me a Dr. Brown's specialty bottle, and some advice on how to use it.

I was finally beginning to feel in control of my situation.  I officially had my Cleft Team. He instructed me to send him pictures of my newborn as soon as possible so he could see what work needed to be done, and then to come up with a timeline.