my name is Richard and I live in Zurich, Switzerland. My wife and I have two children, a daughter of 10 and a boy with Down syndrome, Jamie, who will be turning 7 in December.
Jamie has an ASD II, size 4x5mm (0.15x0.2 inch), with slight left to right shunt, without right heart enlargement, but - at least according to our own judgement - with light symptoms as short breath and daytime sleepiness. His sleepines is so bad at times that he needs to take a nap at school or after returning from school we can keep him awake only by placing him in front of the tv which is not something we like to do. We've already ruled out iron deficiency and hypothyroidism, so we're left with the ASD as only thinkable culprit just now.
My wife and I had an appointment with Jamie's paed. cardiologist in the children's hospital yesterday afternoon.
He's been having an ultrasound done every year and each time we were told that the ASD might close on its own and if it didn't until he's six- or sevenish, there would always be the option of closing it with an Amplatzer device. But yesterday the same cardiologist told us that they never close an ASD II like this if there are no severe symptoms and no measurable heart or lung problems. On the other hand, if we'd want to go for it he'd do the operation to set our minds at ease, even though there is still a slight risk (anesthesia and perforation).
The information on the net somewhat conflicts with what he said, as I read that life expectancy is decreased with an untreated ASD. I also know of other parents whose children had similar sizes of ASD II that were eventually surgically closed. Still, I tend to listen more to an experienced specialist than unsolicited information on the internet...
I'd be very grateful to hear a second opinion, thanks in advance! This is a great service here by the way, thanks also for devoting your time and energy for answering questions like this.
Without evaluating Jamie, I cannot say for sure if he needs to have this defect closed specfically, or not. I can say that a 4x5 mm defect MAY be large enough to cause enough cardiac recirculation to cause some symptoms. As well, with Trisomy-21, he is absolutely at greater risk of pulmonary hypertension, or irreversible high blood pressure across the lungs, so we do tend to take a more aggressive stance toward closing defects like this. It is interesting that he doesn't have any right ventricular enlargement. And, it is often difficult with these kids to ascertain the reason of exercise intolerance, sleepiness, etc. He could be obstructing his airway, snoring, and having sleep apnea, which is a common finding in these kids. That said, unrepaired moderate and large ASDs can lead to pulmonary hypertension. If he meets criteria for placement of an Amplatzer device by transcatheter means, he should actually do well with it; the success rate for this is quite good, and the long term outcomes are excellent, as well. You may want to consider a true second opinion, to include an evaluation, and not just this advice, however.
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