In process of getting heart cath and echo to Boston Children's and CHOP for 2nd opinions... but have been reading and have some general questions. If a newborns pressures never fully normalized due to defects (vsd and ASD causing pressure)... once the holes are closed then the pressures could still normalize and fully reverse PH? Transcath vsd closure... has high chance of heart block but still has short/mid term good results but statically same results as OHS just less invasive of procedure and less blood loss and hospital stay? Would it even be considered for a 3 month old? Which has better long term results generally speaking? What kind of life can a child have after having these types of procedures? Also, to travel to other hospitals is it OK to fly or better to drive?
You definitely have a lot of good questions. For starters, transcatheter VSD closure is not performed in infants because the delivery system is WAY too big, so the other questions are moot at this point. With regard to pulmonary pressures normalizing after VSD closure (ASD shouldn't be too much of a problem, since it's a low pressure shunt), I can't say for sure for your child. However, yes, typically we see the pressures normalize once the defect is closed, assuming that there is no residual significant leak or valvar dysfunction. The good news is that after typical surgical closure of a VSD, the data suggest that these kids can have a normal lifespan, and have no restrictions. There is a bit of increased risk of arrhythmias later in life, and they will need lifelong surveillance, but by and large, they do well. with regard to travelling, it depends on how far you're going and how the baby is doing. If there is no congestive heart failure, an airplane may be just fine, although without evaluating your child, I cannot say for sure. Finally, getting the signed off report takes persistence and, occasionally, a call to "higher up folks". I'm sorry that you have had to advocate for your child like this, but you may not be able to achieve all that your child needs without more of a push.
Sorry.. in regards to getting the 2nd opinion... the delay is getting heart cath report... have images on a cd...but cath was done 2 weeks ago and hospital can't give me the report I was told b/c the doc hasn't signed off on it yet? Very frustrating... any advice on how to push to get it ?
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