1. My son age 22 also has HLHS
    Linda Black Linda Black United States says:
    November 13, 2012 at 12:12 PM

    Luckily we live in an area where a top surgeon,Dr.Norwood,who invented the Norwood procedure for HLHS babies,was practicing. Childrens Hospital of Phila.I had an ultrasound during my 8th month of pregnancy.It showed that the head size was small or the abdomen was to large.We were sent to Pennsylvania Hospital Phila for a stage 2 ultasound which magnified everything.So it was found during my pregnancy.
    My labor was induced 3 weeks early,during a high risk delivery @ PA Hosp.And a few hours later Joey was tranferred to CHOP.He looked perfectly normal.I was told what happens is a few days after the babies are born the valve from the heart to the lung opens up,and if you are not aware of this condition ahead of time,the baby goes home, seems normal and becomes a"Blue Baby".
    Also during my labor I was given "options".Do nothing and the baby will pass naturally,heart transplant and the baby will have to wait for a heart to become available,or the "Norwood Procedure" which is a reconstruction of the heart with 3 separate surgeries(Joey also had a 4th called Post Fontan).
    I believe I made the right choice,if you go with the reconstruction,you still have the option of transplant later.Do nothing was not an option for me!
    Today Joey is doing Great!He was called" the kid with half a heart" in school,but he has the biggest heart of anyone I know!!
    Please comment!We would love to help anyone with concerns or doubts.Not all situations are the same,since there are different variations of HLHS. But we are here for a hug or shoulder to cry on!
    Thank you for reading!!

    Reply
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