baby with complex heart disease

i had son born on 8 july 09.his name is bilal.i was shocked and depressed when i saw my baby with bilateral cleft lip ,palate and down syndrome.further on scrutiny and seeing the echodiadram of baby it was further revealed that is cardaic too.i m much worried about his health.he is not gaining any weight.he is almost 8 months with 3.5 kgs weight.prone to diseases being cleft lip.i was told that he is situs solitum,Avm ,vsdc 50%aerotic overide,aonta at diaphragm 4mm,and more .perheps i can not understand this medical language.please help

[Marie M Gleason, M.D.]

Dear adeeel:  Children who are born with Down syndrome (Trisomy 21) have a very high incidence of congenital heart problems. As many as 40% of them can have abnormalities of the heart that range from holes between the upper heart chambers (atrial septal defects or ASD), between the lower chambers (ventricular septal defects or VSD), or commonly both (called an endocardial cushion defect).  They are more prone to have a persistent blood vessel between the aorta and lung artery called a patent ductus arteriosus.  In some cases, they are born with a complex heart problem that includes a blockage of blood flow to the lungs called Tetralogy of Fallot, which often results in a bluish color to the lips and nailbeds.  The holes in the heart can range in size from small to large.  The larger holes result in poor feeding and poor weight gain.  There is also higher than normal blood pressure in the lungs associated with this, and that can lead to a much shortened life span in these patients. Your son’s weight is far below normal and suggests the presence of a more severe cardiac abnormality.   If the echocardiogram report suggests aortic override, then Tetralogy of Fallot may be present, as well as the ventricular septal defect.  Complex congenital heart disease can only be addressed with surgery, usually performed within the first year of life.  It will not get better on its own, although some medications can be helpful to the children as a temporary measure.  Since you had access to an echocardiogram on your son, you should speak with a cardiologist directly about the results, and whether there are any available congenital heart surgeons in your region.