cardiac problems in children

[moey620]

When a child has tetrology of fallot does that mean that the digeorge syndrome is present?

[Jeffrey R Boris, M.D.]

Dear Moey,

Tetralogy of Fallot is one of the complex congenital cardiac defects that can be associated with DiGeorge syndrome, a genetic mutation that is associated with numerous other medical problems.  However, only 7-15% of patients with tetralogy of Fallot have DiGeorge syndrome.  That said, I do recommend that you obtain testing for your child, either pre- or postnatally, depending on where he or she is at this time.  It is helpful in getting a sense of planning for your child's future as well as, potentially, for subsequent children and their possible risks.

[MWL420]

I have a repaired TOF.  Surgery was done in 1970, and I am still here and kicking.  I did not have digeorge syndrome, and do not know how that changes my experience, but I can tell you I led a pretty normal life.

I am now 43, have had pulmonary valve replacement surgery 5 1/2 years ago, after which I felt GREAT.

I do not know how recovery would be for a small child, and I cannot imagine putting myself in your shoes as a parent.  What I can offer is that post-recovery, I am living proof that you can live a pretty normal life with few restrictions post TOF repair.

I don't know if that helps, or not.

Take Care.

[moey620]

Did your son require surgery? And how was his recovery? We are in the adoption process and considering a young girl with this heart problem and I have talked to drs at CHOP and Hopkins and get hopeful at times and then discourage at other time and we have three kids at home. Thanks so much

[cole2246]

I'm not a professional, but my son has tetralogy of fallot with absent pulmonary valve syndrome and does not have digeorge syndrome. I believe that it can be related to the tetrology of fallot, but isn't always the case. I know of many children with TOF that do not have digeorge syndrome but also many that do. Your child can be tested via amniocentesis before birth or blood test after birth. Hope that was helpful. Take care

Nicole