My 3 1/2 yo girl is my heart baby. She was diagnosed at 20 months with coarctation of the aorta, pda and a bicuspid valve. She had her open-heart surgery in 2007 at 23 months. It was successful and she's been doing good since. Her last follow up was in October 2008. She still has pulmonary hypertension, high blood pressure in her lungs, but not extremely high. I've noticed recently, a few weeks ago, that she does this weird thing where she holds her breath for 2-3 seconds and then releases it with a noice, like a grunt almost. And she sometimes will seem out of breath when doing calm activities. She is able to run and dance without having to catch her breath. When she sings she seems all breathy, though. Is this just some odd habit that she's formed or is it related to her heart? We would prefer not to have to bug our very busy Pediatric Cardiologist unless necessary. Thank you!! :)
Here is a video showing this breathing. It is 35 seconds long and she starts about halfway through the video.
Unfortunately, our hospital computer system does not allow us to veiw online videos, however, i am sure your little girl is adorable. Also, I have to state that I am not a pediatric, but an adult cardiologist, so my knowledge of these anomalies is very basic. The only thing that I am concerned about is the high pulmonary pressures. I am not sure why this should still be so after the surgery unless there have been changes in the lung arteries from the PDA. It may be that now that the surgery is done the lungs will remodel and the pressures will fall. I am not sure to say about the occasional breathing problem. It may be nothing to worry about, but with these elevated pressures in the lungs it may also be a sign of a less than ideal cardiac output. The fact that she can dance and run without any problmes makes me think that this is probably of no concern. i would however bring this up with your pediatric cardiologist the next time you see them.
My daughter was also born with a coarc and bicuspid valve. Don't hesitate to call your daughters cardiologist with any questions or concerns. That is what they are there for and I know my daughters cardiologist is always willing to answer any concerns I have had. It will also make you feel better if just to be reassured that she is ok. It is a scary thing to have a child with a heart defect esp when they are so little and can't tell you what they are feeling.
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