Congenital Heart Defect/Disease (CHD) - Nearly one percent (8 of every 1000) babies are born with a heart defect. CHD is the most frequently occurring birth defect, and the leading cause of birth defect-related deaths.
Great advancments have been made in recent years in the treatment of many Congenital Heart Defects. The advances made in the treatment of HLHS are staggering. What only two decades ago was uniformly fatal now has survivors numbering in the thousands. While the road to survivorship is still a very difficult one, it is unquesionably full of hope.
As mentioned in our story, parents of newly diagnosed infants with HLHS are generally given three treatment options by centers that treat HLHS and by informed doctors.
Option 1: Compassionate Care:
Option 2: Surgical Reconstruction:
Option 3: Heart Transplant:
Unfortunatly, news of the fantastic advances in treatment is not reaching Obstatricans and Pediatricians quickly enough. Many of them still believe that HLHS is always fatal. The information that they have received regarding treatment is, in many cases, very dated. Our OB's office did mention the possibility of a surgery, but we were told that very few HLHS babies are canidates for the surgery and that the survival rates were very low. Many parents of children with HLHS are given very similar inaccurate and outdated information. One parent recently reported that upon explaining that her child had HLHS, her new OB/GYN replied "A child cannot survive that, you must not be clear on your daughter's condition!"
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