Mitral Valve Surgery for Newborne

My niece just had twin boys in a hospital near Charlotte, NC on November 8th.  Both boys weighed just over 5 lbs at birth but one twin had obvious heart problems and was immediately sent to the Charlotte Medical Center Neonatology ICU where he remains.  The healthy twin is now home and doing fine and has passed an extensive array of tests.  The ill twin was stabilized initially but after being in the ICU unit for 12 days developed an infection and almost died.  He responded to antibiotics and was recovering, except for severe water retention, when his heart stopped two times in one night.  He is again recovering and his color is good and he is again becoming active.

My niece and her husband were initially told that the baby would require heart surgery to replace the mitral valve which was not functioning.  The other heart valves were working fine.  The baby was to be kept in ICU to strengthen him for the surgery.  They have also been told repeatededly that this mitral valve disfunction in an infant is very very rare and they are becoming terribly concerned about having the surgery performed in this hospital.

I have two questions--(1) How rare is this problem in infants relative to all heart problems that infants may have? and (2) Is there a hospital in the Eastern US which "specializes" in this type of surgery on infants?

[CCF CARDIO MD JMF]

I would have to refer you to our pediatric cardiologist here at CCF.  I would recommend Dr. Kichuk for further information.  He may be reached at the number listed below. In the Eastern US I could recommend CHOP ( children's hospital of PA) or Children's Hospital in Boston.  

Best of luck.

[Bev]

My prayers are with your little nephew and his family during this difficult time.  I know what it's like because my daughter also has a very rare cardiac anomoly.  She had her repair at CHOP (Childrens Hospital of Philadelphia).  They were and still are wonderful.  They may be second statistically to Childrens of Boston, but they saved my childs life and continue to care for very thoroughly, and I recommend them highly.  I am not an expert and don't pretend to be.  I'm just a parent of a child with heart disease and I feel very confident about recommending CHOP.  Best of luck to you and your family.

[CCF CARDIO MD JMF]

Thank you for your comments.