Just wondering my son has post Tetralogy of Fallot. Are there any people on this board that have had it? If so have you had to under go anymore surgeries since the repair? We were told he may need one more. Just curious.

Thanks,
Nat

Hi Nat- I don't have any info for you, except I know that often the first surgery is a "temporary" one if the baby is small and they go back again to do more later..... but here is a good link (approved to post by the moderators of Healthboards) that has a wealth of information on tetralogy of fallot, although I'm sure you've probably done a lot of research already. Hope it helps a bit....
http://search.nl m.nih.gov/medlineplus/query?MAX=500&SERVER1=server1&SERVER2=server2&PARAMETER=tetralogy+of+fallot&DISAMBIGUATION=true&FUNCTION=search&x=13&y=4 (http://search.nlm.nih.gov/medlineplus/query?MAX=500&SERVER1=server1&SERVER2=server2&PARAMETER=tetralogy+of+fallot&DISAMBIGUATION=true&FUNCTION=search&x=13&y=4)

Good luck,

zuzu xx

[This message has been edited by zuzu8 (edited 06-21-2003).]

Hi Nat, am a paediatric cardiac nurse (though I'm sure you've had enough of those!!)

Just to say without knowing more details it's hard to explain what further surgery your son may need.

I presume he had the "full repair" where they closed the hole between the ventricles and enlarged the pulmonary artery (which takes blood to the lungs). The main things requiring further operations are a residual hole between the ventricles (VSD) after initial surgery or a residual narrowing or re-narrowing of the pulmonary artery (pulmonary stenosis). Also because the pulmonary artery has been enlarged, the efficiency of the valve at the bottom of it (which prevents blood flowing backwards from the PA to the right ventricle when it relaxes)can be affected. This is usually mild, and although affected children won't go on to be olympic runners, they cope very well with everything else. Occasionally however the valve is affected more severely and a new one has to be surgically inserted.

If it's any consolation, this is a very common defect (accounting for 5-10% of all congenital heart defects) and so the surgeons are very experienced in dealing with this and will keep a close eye on him whilst he grows up. Many children require no further surgery after their inital repair.

If it has been mentioned to you that he may need more later on and you are worried, you should ask the Dr's or Nurses whether this is because a slight problem has already been identified (often on post-op scans they may see a remaining small hole for example, which although causing no imminent problems they feel may effect him more as he grows)or whether this is just the exact standard information which they give to all parents of children whom have undergone this type of surgery.

Hope this helps a little bit xx

Sorry Nat, forgot to add on my above message but there is a very good website at www.pediheart.org (http://www.pediheart.org) which have all sorts of resources for parents about cardiac conditions, surgery etc plus links to useful sites and a facility for e-mailing clinical nurse specialists, surgeons etc with any questions you may have.