If you would like more information, please contact us:
About California Heart Connection:
California Heart Connection was founded by two "heart moms" who recognized a need for those with congenital heart defects to connect with each other to share information and support. Karin Yospe and Debbie Hilton-Kamm met through an online support group and realized they both lived in southern California - in fact - just a few blocks away from each other. They soon realized that they both had a passion for sharing information with other heart families, and wanted to help them connect. They began by organizing a summer picnic for heart families and discovered that there was a great need for a local source of information and support. Here are their stories:
Karin gave birth to her daughter, Rebekah, in 1999. Weighing 5 pounds 4 ounces, the baby was small, but otherwise pronounced "perfectly healthy." When she was 5 days old, doctors detected a loud murmur. Karin wasn't very alarmed since many people have "innocent" murmurs. However, they spent the next few days in a blur of tests and second opinions.
Finally, Karin and her husband Ivan were given the baby's diagnosis: congenitally corrected Transposition of the Great Arteries (cc-TGA), situs solitus of the atria, pulmonary stenosis, nonrestrictive ventricular septal defect (VSD) and Dextrocardia. Basically, her heart is backward and on the wrong side of her chest. She may need surgery in the future.
Debbie and her husband Ron received their baby's diagnosis at a routine 20-week ultrasound during pregnancy. Expecting to just find out if the baby was a boy or a girl, they were shocked to learn that their unborn child had only half a heart, a condition called Hypoplastic Left Heart Syndrome.
They immediately looked up the condition on the internet and at first found only very out-dated information which gave a very negative prognosis. After finding a medical journal search engine, they finally discovered information on treatments available: a heart transplant or a 3-stage surgical procedure which reroutes the body's circulation so that the body can function utilizing only two of the heart's four chambers. They opted for the latter and researched hospitals and surgeons who specialized in that surgery.
Their son, Braedon, was born in 2000 and underwent his first surgery at one week old, the second at six months of age, and the third stage just before his second birthday. Today, he is doing very well and is a very happy, active young adult.
To help other parents find information on HLHS more easily, Debbie created the HLHS information website and has been contacted by people all over the world. Fortunately, there is now better and more positive information on the internet. However, some parents still receive outdated information. Debbie has worked with physicians and to help improve information given to parents to ensure that they make informed decisions for their child. See our publications page for more information.
California Heart Connection Policies:
PURPOSE: This website is intended for those affected by congenital heart defects and medical professionals to promote better communication and better outcomes for patients. The website and materials are available free of charge. CHDResources.org is a service of California Heart Connection, a 501(c)3 organization which is run solely by volunteers and does not charge a membership fee. The organization exists due to individual and corporate donations and occasional grants from private companies. The site contains no advertising.
DISCLAIMER: This site was developed by parents of children with congenital heart defects and is not intended as medical advice. Please use the material as a guide to discuss topics with your physician. All patients with congenital heart defects are different and some information may or may not be applicable. Always discuss medications and procedures with your physician. The information provided is for informational use only and is provided "as is" without warranty of any kind. California Heart Connection and its board members assume no liability of any kind for any of the information contained in this web site or for any diagnosis, treatment, or other patient management decisions made in reliance thereof. Our Resource Guide is meant as a guide for informational use only and should not be construed as an endorsement of any particular product or company. Please read all materials and instructions relating to any products/services.
COPYRIGHT INFORMATION: Copyright 2002-2019 California Heart Connection. All rights reserved. Materials can be printed for individual patient/physician use only. No part of this work can be otherwise reproduced, distributed or used without the express written permission of the copyright holder.