Helpful Sites and Information on HLHS and CHD
I will continue to update this portion as I come across sites/forums. We are brand new into this diagnosis and still doing plenty of research! If you have any sites you would recommend then please send them through the contact at the bottom of this page. We are taking any info and support sites we can find.
http://www.sisters-by-heart.org/
Sisters by heart is a group of heart moms who came together during their CHD journey – some of whom were fortunate to meet prior to their CHD warriors arrival. We’ve supported each other in our journeys with our congenital heart defect children. Knowing the challenges and difficulties we faced upon diagnosis, and more so, upon bringing our HLHS fighters into this world, we created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of our mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey. We want them to know that they are not alone and provide resources and understanding while their child undergoes care and treatment from birth throughout recovery.
Sisters by heart is a group of heart moms who came together during their CHD journey – some of whom were fortunate to meet prior to their CHD warriors arrival. We’ve supported each other in our journeys with our congenital heart defect children. Knowing the challenges and difficulties we faced upon diagnosis, and more so, upon bringing our HLHS fighters into this world, we created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of our mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey. We want them to know that they are not alone and provide resources and understanding while their child undergoes care and treatment from birth throughout recovery.
http://www.babyheartspress.com/
Baby Hearts Press is an independent publishing company that has been providing books and resources for the congenital heart defect (CHD) community since 1997. Owner and founder, Anna Jaworski, is the mother of a young adult with the complex congenital heart defect known as hypoplastic left heart syndrome (HLHS). She is the author of two books, editor of two books, a contributor to a number of books (on CHDs and self-publishing) as well as a public speaker.
More on baby hearts press owner Anna Jaworski...I recently purchased the e-book from her website because as each forum and HLHS site I read she has written one of the best and most helpful HLHS books, Hypoplastic Left Heart Syndrome: A Handbook for Parents. It can be found at this link. http://www.babyheartspress.com/book_hlhs.html
Many cardiologists and doctors recommend and have given new parents with infants born with HLHS a copy of this book. I can't wait to read it!
Baby Hearts Press is an independent publishing company that has been providing books and resources for the congenital heart defect (CHD) community since 1997. Owner and founder, Anna Jaworski, is the mother of a young adult with the complex congenital heart defect known as hypoplastic left heart syndrome (HLHS). She is the author of two books, editor of two books, a contributor to a number of books (on CHDs and self-publishing) as well as a public speaker.
More on baby hearts press owner Anna Jaworski...I recently purchased the e-book from her website because as each forum and HLHS site I read she has written one of the best and most helpful HLHS books, Hypoplastic Left Heart Syndrome: A Handbook for Parents. It can be found at this link. http://www.babyheartspress.com/book_hlhs.html
Many cardiologists and doctors recommend and have given new parents with infants born with HLHS a copy of this book. I can't wait to read it!
http://hlhsinfo.homestead.com/FAQcaringforbaby.html
Welcome to the HLHS Parent information page. This site was designed by parents of a child with HLHS to help other parents receiving the prenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). This site contains frequently asked questions, surgical options, questions to ask, products/checklists, important terms, resources, and several other helpful links.
Welcome to the HLHS Parent information page. This site was designed by parents of a child with HLHS to help other parents receiving the prenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). This site contains frequently asked questions, surgical options, questions to ask, products/checklists, important terms, resources, and several other helpful links.
http://www.cdc.gov/ncbddd/heartdefects/hlhs.html
Facts about Hypoplastic Left Heart Syndrome from the Centers for Disease Control and Prevention.
Facts about Hypoplastic Left Heart Syndrome from the Centers for Disease Control and Prevention.
http://mendedlittlehearts.org/
Mended little hearts is an organization that offers local support and care packages to families with children with heart defects while they are in the hospital. You can apply for membership and paired with other families that may be experiencing the same things.
Mended little hearts is an organization that offers local support and care packages to families with children with heart defects while they are in the hospital. You can apply for membership and paired with other families that may be experiencing the same things.