February 25, 2010

"Just the facts, ma'am" Pt. 2

We returned to Vanderbilt last week to see the pediatric cardiologist (our first time back there since December). As before, there was an ultrasound and then we talked to the doctor. Below is a rundown of what we learned (if you need a refresher, go back and look at this post again). As before, I'm doing this from memory, so I may be off on some of the finer details.

  • Nothing has changed with the diagnosis. He still only has half a heart and will still need three surgeries in order to survive.
  • Ayden was a bit more cooperative this time around, allowing them to get pictures of things they couldn't before. They continue to gather information about the exact structure of his heart.
  • The doctor said it is possible that Ayden doesn't have an underdeveloped left side, but instead may essentially have no left side, at all. This could have been caused by a breakdown in the left-right development cues - i.e., it's possible he has heterotaxy. Heterotaxy can produce other issues, such as reversed gut, an appendix on both sides, or a missing spleen. My understanding is that we won't know if any of those types of issues are present until he is born.
  • HLHS is most likely a genetic issue. The specific gene(s) responsible are unknown. After having one child with HLHS, the likelihood of a subsequent child also having it (or some other defect) is 10% (as opposed to 1% in the general population). Heterotaxy does not carry an increased likelihood of occurrence in later children.
  • Should Ayden survive all of the surgeries, there are some fairly rare complications that could develop, including blood clot dangers, leakages, and fluid accumulation.
  • On the positive side, other than this whole heart thing, Ayden continues to get bigger and stronger. Everything else about him - weight, head shape, etc. - are within acceptable ranges. He continues to move around like he should, much to Allison's consternation at times.
  • One of the benefits - I hate using that term, but "positive-side-effect-of-increased-doctor-visits-that-we-would-gladly-give-up-to-not-have-deal-with-this" is a bit ungainly - is that we get to see a lot more of Ayden right now than we would under "normal" circumstances. This last round of ultrasounds produced a rather humorous moment when the tech was trying to find Adyen's femur so she could measure it. Because he was all balled up, she was having some difficulty. She initially thought she had it, but it turned out to be the lower half of his leg, not his thigh. You could clearly see the bone on the screen and, upon closer examination, the outline of his leg (ankle to knee, including the shape/size of his calf), which appeared to be quite chubby. Now Allison is worried that she's going to have to squeeze a big 'ol baby out of her tiny little body (there are so many jokes I could insert here, if not for Allison's desire to keep this blog "family friendly").

1 comment:

  1. Prayers are still with you! I work with your mom at school and she sends us updates and links to your blog. Keep your faith, and know that many people are praying for all three of you.
    Angela

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