I've been intending to write a more thorough description of my meeting with the pediatric orthopedic specialist who will be treating Tiebreaker's clubfeet. I don't have a ton of time at the moment, so here's basically a condensed version of what I wanted to write in a Q&A format.
Who will be treating your baby's clubfeet? Tiebreaker's doctor is Dr. Lee Segal at Phoenix Children's Hospital.
How did you find him? The day we received Tiebreaker's diagnosis (May 17, 2013), I visited Ponseti International's website and found their list of preferred providers, as listed by location. At the time, Dr. Segal was the only Ponseti-certified orthopedist listed for the Phoenix area. (Since that time, another doctor at Phoenix Children's Hospital has become Ponseti-certified!)
I checked with my insurance company to see if he was in-network (he was) and if I needed a referral from my OB first (I didn't). I called Phoenix Children's the following business day, explained about Tiebreaker's diagnosis, and set up a consultation appointment for August 8, 2013. The receptionist who set up the appointment was very kind and put me at ease, assuring me that Dr. Segal had treated many children with clubfoot and did a wonderful job.
Prior to the appointment, I read Dr. Segal's CV and watched the videos about both him and the Center for Pediatric Orthopedics, as featured on the Center's website:
On August 8th, I arrived at the appointment promptly at 4pm... and ended up waiting for an hour and a half. Apparently there had been some emergency and Dr. Segal was running several hours late. Luckily I had cleared my schedule for the evening (except for coffee with a friend, which I was able to postpone) and I had some Kindle books to keep me occupied.
The staff was very attentive to me and apologetic about the delay -- a nurse checked on me regularly to update me on how much longer it would be (I was in the waiting room for about 45 minutes, and then waited in a consultation room for an additional 45 minutes). They offered me snacks and bottled water as well (I declined the former -- too nervous to eat -- but accepted the latter).
Finally, around 5:30pm, Dr. Segal came in. He had several other doctors with him, including the other Ponseti-certified doctor, a student doctor, and another doctor whose function I can't remember. We sat and talked for about 30 minutes. I liked him immediately. He was very kind, very personable, and put me at ease right away.
He asked about Tiebreaker's medical history so far, how my pregnancy was going, what research I had done, etc. I offered him the DVDs I'd brought with me that contained the ultrasound images of Tiebreaker's feet, but he didn't feel it was necessary to see them, given that he'd received and read the ultrasound report. It was impossible, he explained, to judge the severity of the clubfoot based on ultrasound images; it was just best to wait until the baby was born and he could examine his or her feet personally. He also explained the treatment process and asked if I had any questions.
Of course, I did -- I had an entire list that I'd been compiling since May. These are the questions I asked, and paraphrased versions of his answers:
When do you recommend starting casting? Do you recommend beginning within days of baby's birth? Dr. Segal answered that he recommended starting casting within the first two weeks of the baby's birth, assuming the baby was otherwise healthy and doing well, but the exact timing was flexible depending on what the parents wanted.
He asked when I would prefer to start treatment, and I explained that I only had six weeks of maternity leave so I was hoping we could get the baby out of casts entirely by the time I had to go back to work. Given my short leave time, my preference was to begin as soon as possible. He said we could definitely work out a schedule to our mutual satisfaction once the baby arrived.
Baby wearing - I'm thinking of the Baby K'Tan sling and the Beco Gemini. Do you have any recommendations? He said he didn't have much experience with babywearing and advised me to talk to other mothers of kids with clubfoot for advice (I already had by that point, and the two slings I mentioned above were the most recommended by them -- I've already purchased one of each!).
Do we need to have a pediatrician for the baby, or can we continue to use our family practice doctor? He said that a family practice doctor was fine (assuming baby was otherwise healthy).
Tenotomy - do you perform the tenotomy under local or general anesthesia? Dr. Segal said that in a baby with unilateral clubfoot (when only one foot is affected), he used local anesthesia, but for babies with bilateral clubfoot, when both feet were affected, he preferred to use general anesthesia, since two tentomies at once could cause more pain, moving around, etc.
What boots/brace combo do you recommend once casting is done? He recommended the standard AFOs and Ponseti bar as sold by MD Orthopedics. I asked about the Dobbs bar, and he said that it was an alternative option if the Ponseti bar didn't work well, but he recommends trying the Ponseti bar first as he's seen the greatest success rate with it.
Will we get boots & bar through this office or will we order them independently? He said that the office would help us with the ordering process at our last casting appointment, and that there was an orthopedics shop not far from the hospital that had clubfoot paraphernalia in stock, so likely we could purchase what we needed the same day. Eventually, he's hoping to stock them in PCH itself.
I think I asked additional questions but I can't remember them. :)
Dr. Segal gave me his personal business card and told me to e-mail him directly as soon as the baby was born, and he would take care of setting up our first casting appointment himself.
I input the information into my iPhone immediately, and it's a good thing I did. I put the card in a folder of materials (printed PDFs explaining about clubfoot, the treatment, the importance of following the bracing protocols, etc.) I'd been given at the outset of my appointment, and then I promptly forgot to take the folder home! (I had to rush to the bathroom after the appointment and I think I left them in there -- oops!) But I already knew that the PDFs were available on the website for download, and I had the business card info in my iPhone already, so I didn't worry about it.
I feel much more settled and confident knowing that we have a good care provider for the baby and a basic treatment plan in place. Now all we have to do is wait for the baby to arrive and our clubfoot journey will continue (and hopefully I'll post more often). :)