hlhsinfo

California Heart Connection - a support and information network for those with heart defects (our sister site.) Free online support group, important resources and information listed on the website, matching of families, events in southern California.

Little Hearts, Inc. - Free online support group, annual picnic in Connecticut, matching of families

The Congenital Heart Information Network (TCHIN)

Resources on congenital heart defects, online support groups (one specifically for those with children with HLHS), listing of support groups throughout the US and other countries.

Baby Hearts Press - Books for parents with children with heart problems. The HLHS Handbook for Parents is a wonderful guide with detailed information.

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

PubMed: Literature Search Engine

(Tip: Look primarily at the most recent studies in the U.S. for the most up-to-date success rates.)

Selected Journal Abstracts

We've listed some of the journal titles for you, including those on surgical results, neurological and developmental outcomes, and a recent study (2010) of 2 young women with HLHS who gave birth - which was previously thought impossible.)

TLContact - Offers a free web page for parents with hospitalized children which helps keep family and friends updated. This service was founded by the parents of a child with HLHS.

Free Physical/Occupational/Speech Therapy - Most states offer free services for children who have undergone surgeries. See the National Information Center for Children and Youth (NICHCY) state resource sheets for services offered in your area.

Picture of Hope - An annual picture of many children with HLHS provided by Little Hearts, Inc. - a nonprofit organization for families affected by CHD.

California Heart Connection's Picture of Hope

TCHIN Portrait Gallery - Profiles and pictures of children with HLHS

BeNotAfraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.

NBC's DATELINE aired a special on children with HLHS Friday, August 22, 2003. See the DATELINE story, "Saving A Broken Heart" to read the transcript. For a video copy of the show, call Dateline at 1-866-622-8273.

The following are recently published medical textbooks on Hypoplasic Left Heart Syndrome. These are intended for physicians, and are somewhat technical, however, they are also available to consumers. You may want to suggest that your pediatric cardiologist order one of these books so that he/she has the most up-to-date information on the treatment of HLHS. Cick on the title to go to see the publisher's description of the book, and the table of contents.

Hypoplastic Left Heart Syndrome, edited by Jack Rychik, M.D. and Gil Wernovsky, M.D.

Children's Healthcare of Atlanta - Very good explanations of the 3-stage procedure with animated diagrams of the heart.

The University of Michigan - Very good explanations of HLHS, and the 3-stage procedures

CovePoint Foundation - Good interactive diagrams showing the normal heart, fetal heart, and blood flow before and after surgeries (move your mouse over the diagrams)

American Heart Association - How the Normal Heart Works, Heart Defect Fact Sheet, How Cardiologists Diagnose Heart Defects, and other good information.