what is the prognosis of a 21 month male with 4q33 deletion. he has bilateral hydronephrosis,grade 4-5 bil, vsd,asd and questionable biliary atresia. we are having trouble getting him seen. His pediatrician says hes doing fine but he hasn t seen a cardiologist since birth. he is crawling and getting ready to walk but even crawlin 20-30 feet requires him to lay down on the floor and take a break. he intermittently has very irregular arthymias and circumoral cyanosis. I can t get anyone to pay attention. he isn t my child but a sort of honory nephew. I have been with him since birth and have been a nicu nurse for 30 years.I have worked with eveything from ecmo to open heart so i do have a backgroung. ai assume the prognosis is not good but what can we do to make him comfortable?
Child having congenital heart disease since birth. Perioral cyanosis and easy navigability is suggestive of the chronic cardiac failure. And I think at these point nothing can be done. Early cardiac surgical correction may have helped. And in future child may go into cardiac arrest due arrhythmias(suggestive of cardiomegaly most preferably). Only supportive care at time of chaotic spell and medical care will make life easy for child.