Today we’d like to introduce you to Danielle Maloof.
Thanks for sharing your story with us Danielle. So, let’s start at the beginning and we can move on from there.
The Save the Heartbeat story starts with the birth of our second son, Remington. As with our firstborn, our expectation was that our second baby was going to be born completely healthy; but shortly after his birth, doctors noticed that our Remy was turning blue and quickly discovered he wasn’t getting enough oxygen to his brain. After a whirlwind of emergency ambulance rides, life-flight helicopter transfers, and constantly changing information, he was diagnosed with a congenital heart defect known as transposition of the great arteries (TGA). This diagnosis required another hospital transfer – this time he would be airlifted to Children’s Hospital Los Angeles. Throughout his six years of life, our Remy has undergone two catheterization procedures, one open-heart surgery, and four brain surgeries (he suffered an internal brain hemorrhage, likely a result of his heart surgery).
Despite it being the most common birth defect, we had no clue what CHD even was before our Remy was born, Even scarier than that, almost 2/3rds of cases go undiagnosed before birth, leaving families totally unprepared and unaware of what’s to come when their child is born. It is also severely underfunded and there is a massive community of people affected by this disease who are desperate for companionship and support. Knowing that we knew we needed to give back once we made it through the darkest days of our journey, Our fight for our son quickly turned into a fight for all the 1 in 120 babies that will be born with CHD every year.
We founded Save the Heartbeat a couple of years later and our mission is simple – we fight to improve the lives of those affected by congenital heart disease, one heartbeat at a time. Our core values include increasing awareness, funding research and early detection programs, and engaging in community outreach.
We don’t know what the future holds for possible surgeries and treatment down the road, but today we count our blessings for our miracle that is Remington Daniel Maloof.
Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
The emotional toll of our own story and the stories of the families we come into contact with are probably our biggest struggles as an organization. Seeing the number of people affected by CHD and the lack of funding to fight back against it can make us feel hopeless at times. But then we see the Heart Warriors out there who have fought and continue to fight their own personal battles with congenital heart disease and we are reminded that we must soldier on. They’re our little reminder that the small dent we make in the battle against CHD matters.
And the lingering cloud of the disease is always lingering over our own heads – while our Remy has been surgery-free for four years now, there is always the possibility and in his case likelihood, that he will need another surgery down the road. Surgery is not a cure and patients can only be treated or repaired.
Please tell us about Save the Heartbeat.
We are a non-profit that raises awareness, funds research & early detection programs, and engages in community outreach for those affected by CHD. Our main focus is working with Children’s Hospitals in Southern California to train sonographers and other medical professionals who perform pre-natal scans on the latest and best techniques to catch CHD in-utero. Currently, only about 1/3rd of cases are diagnosed in-utero and our goal is to change that.
Our proudest moment was at the early detection symposium we put on with Children’s Hospital Los Angeles earlier this year where we had over 130 technicians learning the latest methodologies in CHD detection.
Is there a characteristic or quality that you feel is essential to success?
A hopeful outlook. We are constantly surrounded by heartbreak, families in the depths of hopelessness, and loss. Without a hopeful outlook, this work would be unbearable. We are energized and fueled every time a medical advancement is made, or someone comes to us and says they found comfort and community within our organization.
Pricing:
- Signature Diamond Necklace – $899.00
- Signature Heartbeat Bracelet – $299.00
- Signature Mini Necklace – $299.00
- Signature Sterling Silver Necklace – $99.00
Contact Info:
- Website: https://www.savetheheartbeat.org/
- Email: [email protected]
- Instagram: instagram.com/savetheheartbeat
- Facebook: facebook.com/savetheheartbeat
- Twitter: https://twitter.com/STHBofficial
Suggest a story: VoyageLA is built on recommendations from the community; it’s how we uncover hidden gems, so if you or someone you know deserves recognition please let us know here.
