Wednesday, August 17, 2011

Decisions: To See or Not to See


Gianna went back to the opthalmologist last week to get an update on whether the glasses and patching are helping her eyes.  The great news is there is improvement in her right eye!  The downside is that the opthalmologist is recommending that she still needs surgery on both eyes before age 2 so that she doesn’t lose vision in the weaker eye, develops her depth perception properly, etc. So we're facing a dilemma.... The issue is that there is some new evidence that 2 or more general anesthesia exposures in children less than 4 years old is linked to possible developmental disabilities, cognitive issues, attention problems, etc.  (See SmartTots initiative for more information.)  Gianna has already had general anesthesia on three different occasions, so we are really hesitant to have her exposed again at an early age if the surgery could be put off until later.  We're getting as much medical advice as possible and praying that we're armed with enough information to make the right decision for her. 

2 comments:

  1. I hope you don't mind me commenting on this. I first started following your blog before Gianna was born and found your story through Jessica at siasl.

    I looked at the SmartTots website, but didn't read through the entire thing. It sounds like, so far, most of the studies are in rodents, with only a couple in primates. You can't always make conclusions about humans from this type of research.

    I did see where they mentioned one study that shows that kids under 4 who are exposed to general anesthesia are more likely to have developmental concerns, but I want to point out a few things. First, I'll quote the website:

    "No studies show anesthetic drugs cause harmful effects to the nervous systems of children. One study describes learning disabilities after multiple anesthetics administered in infants and children prior to four years of age, but not from a single anesthetic. In that study, the researchers found that two exposures to anesthetics before age four increased the likelihood of future learning disabilities in reading, writing, and math by 50%. Three or more exposures created even greater risk for learning problems. Exposure for less than two hours did not appear to be linked to learning difficulties."

    First, it is important to note that it says NO studies show harmful effects to the nervous systems of children.

    Second, they don't tell us much about the kids in the study that says anesthesia increases risk of developmental delay. Do these kids have complex medical problems like congenital heart disease, which carries its own risk of developmental delay? Or are these kids who had a broken bone that needed to be fixed? Kids who need surgery more than 2 times before age 4 might also have other complicated problems that also affect their development. Maybe not, but the study doesn't say.

    Also, they say that the risk of developmental delay increases by 50%. On the surface, that sounds like a huge increase, but you need to know the starting risk. What is the risk of developmental delay in kids who don't have surgery? If the risk is only 1/1,000,000 then the increase of 50% would make it a risk of 1.5 per 1,000,000. Again, we don't know.

    However, visual loss is pretty well studied and strabismus and amblyopia have pretty well accepted risks.

    Certainly this is a tough decision, but its hard to look at theoretical risk versus known risk. Definitely bring it up with your doctors! You might even want to send the information to them if you haven't talked to them already, so they could look at it ahead of your conversation.

    Hope this is helpful! And Gianna is adorable!

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  2. Hey Kelly - I wasn't sure how to reply to you directly, but I want to really thank you for taking the time to make these comments! I truly appreciated this!! Everything you said makes a LOT of sense and we're leaning towards doing the surgery. I talked to 3 anesthesiologists this week and their views of the research were much as you described. It's occurred to me lately that I think a big part of the reason we're so hesitant is that G is just doing so incredibly well that we would hate to see her have to go through another surgery again so soon and we would be just so devistated to have her lose any of the skills that she's worked so hard to gain thus far. But I think all things considered, and setting the "emotions" of the decision aside, that it makes more sense to go ahead with the surgery before she's 2. Thanks for caring about Gianna and for following her blog! Sincerely, Amy

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