This web site is not intended as medical advice.  Please consult your physician with any questions you may have regarding your child's condition.

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Hypoplastic Left Heart Syndrome (HLHS)
Information Page
This page was last updated on: February 22, 2019
Frequently Asked Questions (FAQ)
(Please note:  These answers are from a parent's perspective and are not intended as medical advice.  Please check with your doctor or surgeon with any questions.  Also, these answers focus more on the 3-stage surgical option rather than on  transplants or fetal interventions.  This is primarily because the 3-stage procedure is becoming the more typical treatment for HLHS, and is offered at more hospitals.  In addition, it is the procedure we are more familiar with.  We have attempted to answer questions regarding transplants as well but make sure to discuss both options in detail with the cardiologist and surgeon.  To see information on fetal interventions, see the Childrens Hospital of Boston website.)
Causes of HLHS
  What causes HLHS?
  What are my chances of having another child with HLHS?

Pregnancy and Delivery
  Do I need an amniocentesis?
  Do I need a C-section?
  We're getting conflicting information on the fetal echocardiograms, why?
  We're getting conflicting opinions on the best course of action  why is that?
  I'm confused about all of these doctors  -- who does what?
  Will we be able to hold the baby after delivery?
  Will my family be able to hold the baby?
  Should we donate blood now for our baby's surgery?
  What is cord blood storage - and should we consider this?

   What are the pros and cons of transplants and 3-stage procedures?
   How long will we be at the hospital?  

Financial/Insurance Questions
  How much do the surgeries cost?
  Will our insurance company allow us to choose the hospital we want to go to?

  If we travel for the surgeries, when do we go?
  Is it safe to travel while pregnant, or travel with the baby after surgery?
  Does high altitude affect the baby?  

At the Hospital
  What should we take to the hospital?
  How long will we be in the hospital?
Caring for the baby at home
  What special medical care is needed at home after surgery?
  Can we put our baby in day care after the surgery?
  Can we still go on our vacation that we planned for shortly after the baby's birth?
  What restrictions will the child have in the long term?