In the early part of 2007 Scotty and Crista Hines found out they were going to have another baby.  About halfway through the pregnancy they were told that there was something very wrong with the baby’s heart.

The outlook seemed bleak and the news was devastating.  Several exams, ultrasounds, specialists and echocardiograms later, it was determined that their precious unborn baby boy had a very serious heart defect called Hypoplastic Left Heart Syndrome.  The Hines Family had never heard of HLHS prior to Rocco’s diagnosis and were, at best, vaguely familiar with any type of congenital heart defect.

Although statistics vary slightly, CHDs affect approximately 1 out of every 100 births!  Thankfully many heart defects are fairly minor and may be easily corrected.  Amazing advances have been made by the teams of doctors, nurses and specialists working to improve treatment options.  They are making strides, but more must be done.  Also, CHDs can often accompany other more serious defects, so every situation can be different.

It was determined that Rocco had an additional complication known as an intact atrial septum.  Although he was safe in the womb, it presented a very serious threat to his survival after birth.  Willing to explore every available treatment, Scotty and Crista traveled to Boston, MA in mid-September.  Through combined efforts of a very specialized team at Boston Children’s Hospital and Brigham & Women’s Hospital, Rocco underwent an in-utero procedure known as a Fetal Cardiac Intervention.

Rocco Angelo Wade Hines was born on October 21, 2007 in Ann Arbor, MI.  He spent most of three months in the Pediatric Cardio Thoracic Unit (a highly specialized ICU for patients with congenital heart defects) at the University of Michigan’s CS Mott Children’s Hospital.  Rocco battled his way through two open-heart surgeries and numerous procedures throughout his hospitalization.

The time shared with Rocco presented the Hines Family with opportunities they had no idea existed.

First, they saw a need to help fund research so that even more can be known about congenital heart defects and how to help correct them.  Through research, current methods of detection and treatment can continue to improve.  Perhaps some day soon, another child will benefit from what Rocco was able to teach us.

During their three months in Ann Arbor, they also experienced some of the challenges that arise during a lengthy (and emotional) stay away from home.  As a result, Scotty and Crista knew there was a need to reach out and offer support to families during extended hospital stays.

Finally, they felt the need to share their experiences in hopes of raising awareness of congenital heart defects.  Too often parents are told that there are no options available and that nothing can be done to save their child.  Everyone has differing beliefs, but it important to present parents with all of the options.  Heart defects are very complex and some doctors may not be familiar with all of the avenues of treatment.  Sometimes parents must take it upon themselves to do the research and find answers in order to consider all of the available options.  It is important to remember that medical advances are changing and evolving every day.  What may not be possible in a certain region might be the specialty of another.  Procedures that were considered experimental last year could be saving hundreds of lives the next!  Get educated and be informed – the information is out there.

From the opportunities created through Rocco’s fight, a foundation was born.

“Rocco’s Heart – an HLHS Foundation” was established in March of 2008 to help make a difference.  Through generous donations of time, money and support, Rocco’s Heart is up and running!

“Rocco’s Heart – an HLHS Foundation, inc.” is a 501(c)3 non-profit organization.