baby samson

Please note: For informational and research sites, look at the dates published. Know that technology is rapidly changing, and as a result, so are statistics. Understand that some of the information may be a little out of date; even a year can make a difference! Be sure to ask your OB/cardiologist for more recent information, but always check the date. One counselor gave us material from 1993!

I am putting together a list of parents who would be willing to be contacted by other parents, either newly diagnosed or post-birth, to act a resource and for general support. Please contact us if you'd like to be listed. Thanks!

HLHS FAQs & Other Informational Sites

HLHS Information page: Great for FAQs, What to Ask, Important Terms
Hearts of Hope: more definitions, explanations and links to resources
American Heart Association: Another explanation of HLHS
PediHeart - an explanation of HLHS, with links about the Norwood, Glenn & Fontan operations
HLHS Blog: A compilation of links and articles about HLHS. Last updated May 2005.
Specific Information about the Surgeries
Q&A: Hypoplastic Left Heart Syndrome, Frank Pigula, MD Associate in Cardiac Surgery, CHB
Reconstructive Surgery for Hypoplastic Left Heart Syndrome: Some insight into the 3 stages of surgery.
eMedicine: Details about the surgeries.
With pictures & movies:
HeartCenter Online : HLHS - a great site with really helpful movies about how the heart works.
JS Online: Detailed information about the three surgeries, WITH PICTURES
KU Medical Center: A collection of videos and still frames of HLHS-related echocardiograms.

HLHS Resources & Support for Parents

Little Hearts: Little Hearts, Inc. is a non-profit organization founded in January 1998. We provide support, resources, networking, and hope to families affected by congenital heart defects.
Left Hearts
Hope for Children with HLHS: an online support group
CHD Community Contact Information: a list of parents who have offered to communicate by email and their email addresses
PDHeart: A great collection of links, resources and a mailing list.
Hope for HLHS Webstore
Tips for CHD parents
Christie's Cafe: High calorie meals for HLHS babies and children

HLHS Research

Transcription Factors and Human Cardiac Malformations, TBX5
New procedure offers hope in preventing severe heart defect
The Smallest Patients. To help babies with heart defects, doctors can now operate in the womb. From Newsweek.

HLHS blogs

Other CHD blogs by diagnosis

If you've recently received an HLHS diagnosis

PLEASE contact us if you want to talk. Having others who have been through this there for us (even when we just needed to freak out!) has been so, so instrumental in coming to terms with what's we're up against.

If you're here because you wanted to show love and support

Thank you! We've been amazed at the influx of wishes and prayers and positive energy sent our way, and we can't begin to express how much that strength and support means to us. Please take a moment and sign the guestbook.

If you're looking for info on HLHS

Please check out the resources. We were overwhelmed with what's availabe on the Internet; hopefully this will narrow it down a little for you. Be sure to read up on all the babies who are doing well - there IS hope!

Hope for children with Hypoplastic Left Heart Syndrome
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This Hope for HLHS site belongs to Erika, Jason & Samson