Thursday, August 13, 2009

Quick debriefing

We just got out of our meeting with Dr. Azakie, and while I should be preparing for the presentation I have to give at 9:30, I wanted to jot down a quick meeting synopsis first.

The most notable thing about our meeting is that Dr. Azakie was quite enthusiastic about doing a Hybrid procedure for our stage I surgery instead of a Norwood. From my reading, I knew that many surgical centers were doing this alternative surgery with good results, and the feeling was that it was less traumatic and less damaging than the classic Norwood procedure. This page talks about the differences between the two surgeries. Anyway, less invasive sounds good, but the drawback is that the Hybrid procedure is newer and less established, and when I asked Dr. Azakie how many he had done, he said that he had done 3 or 4 with the current method, and about 10 prior to that using an earlier method. So, not many! As I wrote before, Stanford doesn't do Hybrids because they feel that they have very good success with the Norwood, and are of the "if it ain't broke, don't fix it" school. So, that is a big decision we will have to make, but my bias is that if we can do a less invasive procedure, we probably should, even if it is less tested. But I may change my mind about that.

He said that overall, he'd had very good success with the first-stage surgery (using either method) and estimated mortality from that stage to be 5% or less, and that includes babies with low birth weight and other negative prognostic factors.

Going in to our meeting, one of my biggest worries was making sure he was going to be around to do our surgeries. We are due December 9th, although the baby could come later, and the first stage surgery is usually done about a week after birth, which puts us awfully close to Christmas. He assured me that he is not planning any big holiday vacation, and when I asked him what happened if he got the flu, he said, deadpan, "I don't get sick." "Oh, that's right," I said, "you're a surgeon!" He then mentioned that he had an "assistant"...another surgeon who is new to UCSF. I got the new guy's card but haven't had a chance to check him out yet. I expressed some doubt about being foisted off on another surgeon but Dr. Azakie assured me that HE would be our surgeon.

Some other random tidbits from our conversation:

-He estimated that the baby will be in the hospital for about 3 weeks after his first surgery regardless of whether we did the Norwood or hybrid procedure. He said the main obstacle in going home is feeding issues, so it could potentially be much less time in the hospital if he doesn't have feeding problems.

-He also estimated that about 25% of patients go home on oxygen after stage 1 surgery. This seemed pretty high to me compared to what I've read elsewhere.

-He said that he thought that the hybrid would pretty much eliminate the risk of interstage mortality between the first and second surgeries.

-I asked him his gut feeling about how long these palliated hearts could last, and he gave a rather pessimistic answer of an average of 10 years (in contrast, a more optimistic cardiologist told me she thought 30-40 years, at least). However, he didn't seem to be aware of how many people with HLHS in their 20s are out there. He told me that the oldest patients are now "about 20," and I mentioned to him that next week, I'm supposed to meet up with a 24-year-old woman with HLHS, and that I'd heard from a surgeon who had helped a couple of HLHS patients through successful pregnancies, and he was very surprised. But, since he's a surgeon and not a cardiologist, that's not really his field of expertise.

-He also said that there didn't seem to be anything particularly notable about our baby's case. The one thing that did look risky to him was that his ascending aorta seemed to be particularly small. However, he said that it still might grow more before he's born. Let's hope.

Anyway, overall, he seemed pretty nice and was willing to answer all our questions. He also said I could stop by any time to talk, although I imagine that in practice, his schedule is probably not too amenable to that. But overall, I was satisfied with our meeting.


  1. Jen-
    I had to laugh when I read that Dr. Azakie said "I don't get sick." I can totally picture him saying that. Part of his charm, lol!
    Joshua's ascending aorta was hardly over 1 mm...and Dr. Azakie did a great job! People who were in the surgery said they didn't know how he was able to work with it, but he did. I am a little biased obviously, but I think he's great!

  2. Hi Jen!
    Found your blog thru a Google blog search.
    We are headed to Columbus this weekend to welcome our son into the world. He was diagnosed with HLHS @ 23 weeks. Barring any unforseen complications, he will be undergoing the hybrid procedure @ Nationwide Children's Hospital probably sometime in the next week or so.
    I don't know if coming to Ohio is an option for you, but NCH does more of these hybrid procedures than anywhere else and has a great success rate. After meeting Dr. Galantowicz a few weeks ago, I feel so much more confident about our son's chances to have a long, full life.
    You can email me at busters[dot]house[at]gmail[dot]com if you'd like some more info on the good folks @ NCH. I'm sure they'd be happy to talk to you about your son and see what they could do for you.
    Best wishes to you and your family during this time! Keep the faith - we were blessed with these special little ones for a reason.