My daughter hastapvr, a rare heart disease and her pulmonary artieries keep getting narrow. she is going on her third heat catherization. any suggestions?

Hang in there: Unfortunately, this is not an unusual occurence wih kids with narrowed blood vessels of any type. Whether it be narrowed pulmonary arteries, a coarctation of the aorta (narrowing of the biggest vessel in the body) , renal arteries (the kidney arteries), they can re-narrow as your child grows. Thank goodness someone is following this and that you are upholding your end by taking her back for checks.

TAPVR: You need for the doctor to explain this to you. It is a serious problem and not easy to deal with.

Not Uncommon: I care for many patients with tapvr. Unfortunately the pulmonary arteries do not develop normally in these children. Some require numerous catheterization procedures, especially early in life. This is due to rapid rate of growth in infants/toddlers; and it can be appropriately frustrating and scary for parents. Need for caths decreases with age. Unfortunately, there are no good alternatives.

Very few options: Total anomalous pulmonary venous return (tapvr) is a condition in which the pulmonary veins do not connect normally to the left atrium. Can be repaired surgically. Unfortunately, some patients develop recurrent/progressive narrowing (stenosis) of some or all of the pulm. Veins. Very difficult to treat; it does not respond well to balloon dilation, stenting, or surgery. Good program in miami.