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New Resource for Parents of Children with Heart Defects

Posted Aug 19 2009 6:29pm

I came across this report on abc.com and thought some of you readers out there may be interested in reading the original article and getting the book it discusses, It’s My Heart from The Children’s Heart Foundation.  Although M’s heart problems do not seem to be congenital (they are not absolutely sure as her first X-ray in the NICU was “inconclusive” as to whether her heart was already large and my ultrasounds did not seem to show any abnormalities) and the structure of her original heart was absolutely normal, a large number of people I have met here at the Ronald McDonald house and Lucille Packard have children with structural heart defects.  Prior to our experience here at LPCH, I had no idea at all how high the numbers of heart defects were in babies.  During my prenatal visits to the doctors and my ultrasound consultations, we discussed physical and developmental problems that may arise in our baby – Down’s Syndrome since I was older, Spina Bifida, etc., but I do not recollect ever reading or hearing about the possibility of heart defects.  But, the ABC article says that congenital heart defects are the number one birth defect in America.

The Its My Heart booklet comes in both English and Spanish and Cardiomyopathy, which M suffers – or do I say suffered now since she has a new heart? – is included in Chapter Three, “Acquired Heart Conditions”.  After reading the description of signs of heart failure in infants, I realize that it may be difficult to detect some of these in preemies, as they are considered somewhat “normal”.  For example, what I read about preemies indicated that since they had small noses they would tend to “grunt” a bit, especially when feeding.  In addition, preemies tend to have higher heart rates than full term babies.  And, in our case, the X-ray that was taken in the NICU showed a “slightly enlarged heart” but that can be caused by the baby taking a big breath right before they shoot the X-ray, which causes a distortion from the lungs pressing the heart up toward the X-ray machine.  So, she may have been born with it, but she may not have been born with it.

I think the booklet is a great resource for those who have just found out their child has a congenital heart defects.  It will help them communicate effectively with their doctors and nurses, feel more comfortable with the treatments their child receives and just generally understand what is happening with their child’s health.  I hope that some of you might find it helpful!

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