About Hypoplastic Left Heart Syndrome
HLHS is a rare and serious congenital heart defect in which the left side of the heart fails to develop properly.  Because the left side does not develop and does not function, this condition is not compatible with life.  Medical intervention within the first days of life is required for the child to live.  However, most parents are given 3 choices if the diagnosis is made before the baby is born:

  1. A series of 3 Open Heart Surgeries (The Norwood Operation) or a Heart Transplant
  2. Medical Termination of Pregnancy
  3.  Compassionate Care - basically take the baby home and allow him or her to die

I have read many statistics regarding the frequency of occurance for this defect.  Most medical sites state that it is between 1 in 8,000 to 1 in 14,000 births.  With either statistic, this is still considered a rare defect.  Yet, there is one statistic that remains constant in all of the research.  THIS DEFECT IS THE #1 CAUSE OF DEATH FOR BABIES WITHIN THE FIRST WEEK OF LIFE.   But, please know, that if you are faced with this frightening diagnosis - THERE IS HOPE.  

If you are like me, you have never heard of this defect before.  However, after we were diagnosed, we learned that there are many babies in our area and all over the country that are battling HLHS.  Unfortunately, there are many who have lost the battle as well.   It's important to remember both the stories of the survivors and the stories of those who have lost the battle.  They all contribute to the overall picture of this Congenital Heart Defect.  

If you would like to learn more about HLHS or you are looking for support, there are many resources available.  The links below will take you directly to HLHS information of each organization listed.  If you are faced with this diagnosis and would like support, please feel free to contact me.  I would be happy to put you into contact with surviving families.  By the same token, if you have lost a loved one, feel free to contact me as well.  I have found great comfort in sharing my loss with other families who have experienced this tragedy.  You can email me anytime - just click here.


Cincinatti Childrens Hospital


American Heart Association

Texas Heart Institute

Evanston Northwestern Healthcare

Interesting Articles Regarding HLHS

The story of Baby Fae (received the baboon heart at Loma Linda)