Child with CHD

[drito]

My husband and I are trying to adopt from China. We received a packet on a special-needs child. She has congenital heart disease with ASD (ostium secundum), VSD (membranous) shunt from left to right at ventricular level, AT and tricuspid amphi position. I have ultrasound results and lab values. Will this child need multiple surgeries and can she survive?

[Jeffrey R Boris, M.D.]

Dear Drito,

Having helped numerous couples with children who have been adopted from countries around the world, I can tell you that this can be a difficult problem.  I have found that there are some doctors or orphanages that will overemphasize or even make up congenital heart defects about children so that they will be more (or less, depending) likely to be adopted.  Conversely, I have seen babies in which the diagnosis was totally wrong and underestimated (or even missed).  And, of course, I’ve seen it when they are completely correct.  Therefore, despite the fact that you have the ultrasound results on paper, I can’t be sure that what she has is truly what is described.  The smartest thing that I can recommend that you try to do is to get a copy of the actual echocardiographic images as loop recordings on either a VCR tape or on CD, and then take them to a local pediatric cardiologist for evaluation.  There may be a fee involved for this, but it would certainly be able to give you much more information about what she has and give you a better idea of prognosis.

Based on the information that you have given me, I’m not sure what “AT and tricuspid amphi position” means.  This is definitely a problem with the translation, which is also frequently seen when you have a non-medical translator trying to do this.  The atrial septal defect (ASD) and ventricular septal defect (VSD) are common defects that we see, and are typically easily dealt with DEPENDING ON the size of the defects and the age of the child.  If the defects are small, they don’t typically cause a problem, except for the membranous VSD which can lead to deformation of the aortic valve that can cause it to leak.  If the VSD is big and the child is pretty young, it can be dealt with by treatment with medications or surgery.  However, if the VSD (or even the ASD) is big and the child is older, that can lead to what is called pulmonary hypertension.  This is high blood pressure across the lungs, which can be irreversible and potentially fatal.  Therefore, I can’t really tell much about the prognosis of this little girl.  I definitely do not want to discourage you from taking her into your life, though, and giving her a great chance of survival.  I just think that you need to get much more information and then work specifically with a cardiologist who can evaluate everything and discuss this with you.