My son was born with a complete atrio-ventricular canal, PDA, pulmonary hypertension and Down Syndrome.
He had problems with CHF, failure to thrive, etc. and had heart surgery at 3 months of age. He is now 14 months old.
He has had problems since his surgery with rapid breathing, cyanosis, wheezing not related to illness.
These problems HAVE gotten better since the early days post-op, but still continue. What can you
tell me about pulmonary hypertension, and could this actually be the reason for his continued problems? We have
scheduled PFT's with his pulmonologist, and depending on the outcome of those, may do a follow-up cardiac cath. This
scares me, as he had a very traumatic first cath. Are there other things that we could look into taht could be causing
these problems? I was under the impression that lasting damage from PH rarely occurs within the first several months of life,
and since he had his heart repaired (almost totally) at such an early age, how likely is it that this could be the problem?
As with any child that has required major revisions of cardiopulmonary structures at birth,
your child's development of pulmonary hypertension as well as his treatment therein is entirely dependent
on what was wrong at birth, what type of surgical repairs were performed, and most importantly how they have held up in the face of a growing child. That is to say Anji that the repairs performed in early childhood whether complete or not are simply repairs not cures.
You are right when you state that most cases of persistent pulmonary hypertension at birth are transient, but in the data that supports this claim the majority of the children were mormal to late term births with at most a singular congenital anomaly, and in most there was simply a stimulus such as meconium aspiration that instigated the pulmonary hypertension.
Your son has a syndrome, a conglomeration of abnormalities at birth that included a major cardiac anomaly; not only were your son's congenital anomalies more complex at birth in comparison to the "typical" infant with transient pulmonary hypertension, but your son also had major surgery in infancy that corrected his major problems at that time but set him up for future potential problems.
This leads me to a statement that you probably will not like, a cardiac catheterization if indicated will provide a significant amount of information regarding not only the presures in your son's lungs but also a wealth of information regarding all the pressures in the heart that actually paint a picture for the physician that enables he/she to figure out where the problem might be and what therapy would best treat that problem if not make your son feel a lot better.
I hope that you were not given the impression that your son was "fixed" at a young age and that this prcluded his ever having another problem with his heart and lungs; you need to ask his physicians what treatment options there are and what each of those options will provide in terms of improved lifestyle (improved symptoms), and most importantly about reversibility and even decreased mortality (death) that a procedure (surgery) or treatment might provide. Keep in mind that it is often difficult to predict how a child will do since there are so few in any given situation, better stated Anji there are many children with congenital heart abnormalities but only a few in very specific groups with exactly the same difficulties that had exactly the same surgery, etc.
The best advice aI have for anyone with congenitally corrected cardiac anomalies is to continue to follow with the experts in the field which includes the surgeons and the cardiologist that specializes in ongoing evaluation and treatment of such children. Information provided in the Heart Forum is intended for general informational purposes only. Actual diagnosis and treatment can only be made by your physician(s).
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