If you would like more information, please contact us:
Phone (toll free): 1-877-824-3463
California Heart Connection
Irvine, CA 92614
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 child.
To help other parents find information on HLHS more easily, Debbie created the HLHS information website and is 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. Please see our published abstracts.
We hope that California Heart Connection can help you find resources and support. Please feel free to contact us with any feedback.