Just wondering what to expect going forward... 10 week old with 4 mom ASD and originally thought a bunch of small vsd close together but now being told it is probably a larger vsd. Saturation levels are always between 97 to 99 % when taken... weight gain is very slow... only in 7th percentile but length and head in 80th percentile. Pressure in both chambers we're being told is the same on both sides. Shunt from vsd is in both directions? Could that be the cause of pressure? If vsd and ASD are corrected could it fix the pressure? Currently on low dose of lasix.. to help with breathing/feeding... any comments will help...
Without evaluating your little one, I can't say for sure what needs to happen, or what will happen. I can say, with the information that you have given, is that the VSD's are the biggest concern. The ASD can typically be observed. I would not be concerned about the pressure across the VSD's, or in the chambers--those typically normalize if the defects become smaller or the holes are surgically closed. The things that you need to look for is getting out of breath with feeds or getting sweaty with feeds. The growth percentiles are not necessarily predictive this early on of future growth potential, unfortunately. Therefore, looking for those clinical signs and ensuring that there is appropriate continued growth is how we follow these little ones to determine if there is just so much blood recirculating from the left side of the heart to the right side of the heart (causing congestive heart failure) that we need to refer them for surgical intervention. Typically, this time frame (about 2-3 months of age) is when we get a sense of how things are going. Usually we like to see these kids fairly frequently, alternating visits with the pediatrician every 2 weeks and keeping an eye on weight gain and symptoms. That way, if things get worse, we can modify medical management or refer for surgery. The ASD may have a small chance of closing by itself later, but if your child ends up needing VSD closure, it is possible that the ASD could be closed at the same time. That said, the biggest contributor to congestive heart failure symptoms far and away is the VSD's, not the ASD.
Thank you for your reply. We got a chest x ray today and the cath test will be Monday or Wednesday. Since there is no cure for pulmonary hypertension does this mean the outlook for my son is not good? I know we'll know more after the test results... our cardiologist doesn't seem concerned about the vsd any longer but this hypertension... and doesn't think the vsd is causing it b/c he's only 3 month old. So even if we figure out what the cause is and are able to repair it... the pulm hypertension isn't treatable? Sorry this may sound so unorganized thoughts but I'm so worried and all of this is way over my head. All I know is I love my son and want to try to understand what's going on so I can get him all the help he needs.
I wouldn't say that there is no cure for pulmonary hypertension. The research, understanding, and therapies have really advanced significantly, even recently. There are a lot of good medications that are available to treat it. However, what I would make sure that you do is that if he does have PHTN, I would make sure that he is cared for at a center that is used to managing these patients and is familiar with the various strategies for both evaluation as well as treatment. There are numerous reasons for pulmonary hypertension that need to be evaluated. It may be that your son might need a second catheterization, but it would be worth it.
Chest x-ray was fine and findings from heart cath were... ASD is 8mm (bigger than originally thought from echo showing 4mm) a mid muscular vsd 5 to 6 mm and 3 small apical vsd's.. from what I remember pressure was at 65 vs what they like to see at 25? Suggested surgery soon w/in 4 weeks time... 3 options: OHS to fix all, PA Banding to later fix, or meds to prolong but didn't seem like that was viable option. I guess Florida only uses patches and not devices and other hospitals may have other approaches... how would I reach out to other hospitals for their opinions? Looks like now the docs think if holes are closed it would reverse hypertension...
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