Thursday, July 23, 2009


First of all, I wanted to say that Iggy and I have been totally overwhelmed (in a good way) by the positive wishes we have received through e-mail, Facebook, etc. I've tried to get back to people to the best of my ability but have pretty much colossally failed on that point thus far.

A couple of months ago, I committed this afternoon to go talk to kids in a summer program for minority biology students about my work and to discuss their projects with them. Of course, when all this came up, I thought about cancelling, but somehow decided not to, although I ended up being too distracted to really prepare a proper talk. It all turned out fine, though, and I actually had a really good time talking with the much so that I actually didn't think about this problem for a couple of hours for the first time all week, which was a really nice break.

Anyway, I meant to spend most of today at work, but it didn't quite work out that way, but it was just as well, because as I wrote below, you may recall that I had sent a disk of our echocardiogram to a very well-known cardiologist down at Stanford to get a second opinion. However, I wasn't sure when or if she would actually get back to me, but as it turned out, she called me today and talked to me at great length.

The bad news was that the disk with the echocardiogram I had sent her? Wasn't mine. They gave me someone else's scan! So she wasn't able to tell me anything about that.

But we did talk at length about prognoses and about the relative merits of Stanford vs. UCSF. She was generally quite positive about the prognosis for these kids and seemed to also have a positive opinion about their quality of life, although as I already knew, she said that there is no long-term data on outcomes. She also had a high opinion of the surgeons both at UCSF and at Stanford (she used to work at UCSF before going to Stanford). She did say that if it were her kid, she would go to Stanford, because she felt that the surgeons there were a bit more experienced, but she also said that UCSF was very good and that she thought the survival rates were similar and that the postoperative management at UCSF was excellent. (I also heard good things about the UCSF surgeon, Dr. Azakie, through another route...a cardiologist friend of my friend Monica was very positive about Azakie).

She also took the time to give some advice about parenting an HLHS kid, which was to try to treat them as normally as possible, which was a great thing to hear, since it is exactly what I hope to do. She was really just fantastic in every way, and gave me her direct number and said I could call her any time, which is amazing. I called UCSF and asked them to send her the correct scan this time, so hopefully, I'll talk to her again, soon.

One other interesting technical thing I learned in talking to her is about the type of surgery they do there. You can skip this paragraph if technical details are not your thing. For the first surgery, there are two different procedures they can do: one is an open-heart surgery called the Norwood procedure, and the other is a newer, less invasive "hybrid" method. The Norwood is the classic procedure and has been around a long time. The "hybrid" used to only be done on very high-risk babies that they didn't think could survive the open-heart surgery, but now some surgical centers are doing it on virtually all their patients, because they have good outcomes with potentially less risk. But at Stanford, they don't do the hybrid surgery because their Norwood results are so good...she said that in the last year or two they had close to 97% survival and that she thought UCSF had a similar rate. That's pretty amazing, because the first surgery is traditionally the riskiest. I still haven't been able to talk to the UCSF surgeon yet (but finally got insurance approval to make an appointment tomorrow) but will ask him about this, as well.

Anyway, I wouldn't exactly say that today was a "good" day, but it was a significant improvement over the last few days.

1 comment:

  1. So glad things are going better! I have the email for someone at Columbia but haven't reached out to them yet. Let me know if it would be helpful. Don't worry about the feeding tube- it's definitely not the worst thing in the world! Kids end up with them for a variety of reasons. -Elaine