I know I haven't posted to the blog in nearly a week, but I've been very busy researching stage I surgical options and trying to get as many opinions as possible.
After our meeting with Dr. Azakie last week, when he suggested that we consider doing a Hybrid procedure for the stage I surgery, my first response was to try to read everything in the medical literature about Hybrid. vs. Norwood surgery. That didn't take me too long because there's not too much out there that's been published, and a lot of what has been published isn't really relevant to our case for a couple of reasons. One, the Hybrid procedure itself has been around for a while, but has only really been refined to what it is now in the last 6 years or so. And two, because a reasonably effective alternative to the Hybrid was already in place (the Norwood), most places were initially only willing to try this newer, experimental surgery on babies who had other risk factors that made them unlikely to do well with the Norwood. It's only in recent years that certain surgical centers have started doing a lot of Hybrids on babies who would also be good candidates for the Norwood.
Anyway, there are a couple of surgeons who have been clear leaders in the Hybrid field, and I was hoping to talk to both of them, but didn't particularly want to go through the insurance hassle of setting up an out-of-network consult. I had their e-mail addresses from their publications, so I asked my M.D. friend Elaine her opinion...would it be kosher to just write these guys and ask their opinion? She said she thought it was worth a shot, and advised me to 1. use flattery and 2. make myself sound important. Good advice for most things in life, I guess! Anyway, I'm not sure if it was the flattery, or if these surgeons are both nice people but they both agreed to talk to me.
Surgeon #1 has probably done more Hybrids than anyone in the world. He is the head of a surgical department that does mostly Hybrid stage I repairs, and people from all over the world fly to that hospital to have Hybrids done. Unfortunately, my attempts to actually talk to him have been marred by a series of mishaps that would be funny if I weren't so desperate to talk to him. First, he was supposed to call me on Monday, so I took off early from work so I'd be at home and able to talk to him in private. And he did call, except my cell phone didn't ring OR tell me I'd had a missed call, even though I was in an area where I got reception. In addition to being frustrating, it was also pretty embarrassing that I'd asked this surgeon to call and do me this favor and then I didn't even answer my phone. Anyway, then he asked if he could try me the next day, but I had a work commitment. And then we rescheduled yet again for this morning, but I never heard from him...apparently he'd gotten stuck on an airplane. A few hours later, he called back, and I actually did talk to him for a minute, and then he told me that he was headed into the mountains and that his reception might cut out, which sure enough it did about 30 seconds later. We're supposed to try AGAIN at around 3. God knows if it will actually happen, though!
And then I just got off the phone with Surgeon #2. My impression from reading his papers was that he was a bit more skeptical about the Hybrid procedure, and he told me that at the hospital where he used to work, he'd gone through a period of doing Hybrids on everyone, but had since determined that these had a fairly high rate of complications (although these were all things that could be fixed) between the first and second surgeries and had gone back to doing more Norwoods than Hybrids. But despite this, I felt like he didn't really push me either way...I don't want to say that he wasn't helpful, because he did answer all my questions to the best of his knowledge, but his answers were all pretty equivocal, just because nobody has really shown yet whether one surgery is clearly superior to the other.
I asked him about the learning curve for the Hybrid surgery because the UCSF team has done relatively fewer of these than Norwoods. He said yes, there is a learning curve...but that Dr. Azakie had a very good reputation as a surgeon and was likely to learn quickly. I asked him if he had any sense of whether the neurological impact of the two procedures was different, and he said he didn't know. I asked him whether he thought that blood flow to the brain was as good after either procedure, and he said he didn't know.
So, anyway, neither option seems like a clear winner at this point, but we still have a lot of people to talk to and a lot of time to decide.
In other "talking to people" news, I finally did meet with the friend-of-a-friend pediatric cardiology fellow at UCSF for a while yesterday. We only got to speak briefly before he got called to an emergency, but he seemed really nice, and it was good to meet someone else in the department. Tomorrow morning we have an appointment with the head of Pediatric Cardiac Catheterization, who would be intimately involved in the Hybrid if we chose to go that route, so I look forward to talking to him, and then we're also meeting up with a 24-year-old HLHS survivor who lives in Southern California but is visiting the area with her husband. Hopefully I'll have time to report back on all that tomorrow!
3 weeks ago