The Heart of a Father & Groundbreaking Legislation

Dear Heart Readers:

At one point, I really wondered if The Heart of a Father would ever be completed. I despaired of getting the essays I felt were necessary for the book to satisfy the vision I had for it. Today, I shake my head in disbelief. The book is turning out even better than I originally envisioned.

Just when I thought I was done editing every single essay for the book and had turned my attention to the front matter of the book, a dear friend and heart mom, Michelle Rintamaki, forwarded a posting from an adult with a congenital heart defect which was posted on her listserv. It was so good, I had to contact the gentleman to see if he would let me put it in the book. He not only agreed for me to reprint his posting, he sent me another posting for consideration, too! Thus, Steve Catoe's essay, "Who Are We?" will be the lead essay in the Adults with Congenital Heart Defects chapter and his other posting is now a poem which will be the epigraph for the book. I hadn't even planned on having an epigraph! But his beautiful words in "The Heroes We Forget About" made me feel the need to have a poem set the tone of the book. The epigraph is the verso page of the Dedication.

Sue Dove is doing a fabulous job with the book. With a request from me, she changed the cover of the book and now it's even more striking. She has also put all of the essays in the correct format and she has taken the front matter I gave her and put that into the book. The "book" still needs a bit of tweaking, but it is now taking its final form and is allowing me to begin the blueline editing and construction of the Index and Glossary.

Overall I am very pleased with the progress we are making on the book. My goal is to have the pre-publication version of the book available for distribution on April 1st. This time, the draft will be an eBook to speed up the time needed to get it to the reviewers and to reduce the cost of printing and shipping the book. The pre-publication version will be representative of the printed book. Once this book is finished, we will create the eBook and Kindle versions of the book. Although I have already created my wish list of reviewers for The Heart of a Father, if anyone is interested in reviewing the book and taking a survey to help us before the actual publication of the book, please send me an email at jaworski@vvm.com with your credentials for reviewing the book (heart parent, professional working in the heart community or adult with a congenital heart defect).

Now for even more exciting news!

Last week we saw history in the making due to new legislation being introduced to the United States Congress regarding the need for more attention and funding for the congenital heart defect community (CHD). The "Congenital Heart Futures Act" was introduced by Senator Richard Durbin (D-IL) and Congressman Zack Space (D-OH).

One of the most exciting aspects of this legislation is not only the recognition of CHDs as the most common birth defect, but that they were able to bring together representatives from so many sectors of the CHD community. The effort was spearheaded by the following organizations: The Children's Heart Foundation, the Adult Congenital Heart Association, Congenital Heart Information Network, It's My Heart and Mended Little Hearts support groups. This effort united organizations that support the National Congenital Heart Coalition in an effort to persuade senators and representatives to fund important initiatives surrounding CHDs. The effort was also supported by the American College of Cardiology.

For even more information about this initiative, check out ACHA member, Steve Catoe's blog: http://tricuspid.wordpress.com/2009/03/19/text-of-the-congenital-heart-futures-act/

When my son's heart defect was diagnosed fourteen years ago, there was little published information available. Sadly, much of what was written about hypoplastic left heart syndrome regarded only a dismal prognosis at best. Today we are publishing books about hope and the inspirational lives our heart heroes are leading and our country is finally recognizing the need for more funding, support and recognition of this, the most prevalent birth defect in the United States. There is more hope today than ever before.