Elizabeth Paonessa, Chairman of the Board
I am a proud mom of two beautiful boys, Anthony III and Gabriel, and a wife to my husband Anthony. We never heard of CHD’s until I had an ultrasound at 17 weeks pregnant. We were so excited that we get to find what we were having early and never could have imagine to hear that our unborn son Anthony would be diagnosed with Hypoplastic Left Heart Syndrome (HLHS). For being a first time parents, this news was devastating and overwhelming, but we were determined not to give up and see what our options were! Fortunately living on the east coast, we had amazing hospitals to choose from that were close to home. We decided to make an appointment at the Children’s Hospital of Philadelphia (CHOP) in their Fetal Heart Program. After a full day of testing and meeting with experts, there was a detailed plan put into place for delivery and after surgery care.
Our heart warrior Anthony III was born 6 weeks early in the Special Delivery Unit (SDU) at CHOP via an unscheduled C-Section. He has had three open-heart surgeries starting with the Norwood at 1.5 days old, the Glenn at six months old, and the Fontan at 3 years old. He has also had other procedures and surgeries.
Today it is truly amazing seeing how far Anthony has come. He is 3.5 years old, who loves life, spending time with his family, and being a big brother. He enjoys playing with trucks and loves anything involving water. I am so grateful that there is an organization like the CHD Coalition, and it is an honor to be part of it. I love being a Heart Mom and our CHD family!
Like many others who have devoted time and energy to this cause, my involvement with CHD awareness and fundraising began with the following six words: “There’s something odd on the sonogram.”
My son Michael was diagnosed with Tetralogy of Fallot in utero, at 20 weeks – early enough that the law still allowed us a choice. Without ever looking back, and with the help of our new friends at the CHD Coalition, my wife Cathy and I found the strength to endure a rough road of surgeries and hospital stays, and to adapt the vision of our family’s future to one that is permanently altered by our son’s unique heart.
The vision and courage demonstrated by the CHD Coalition’s leadership have been an inspiration and are helping to stretch me beyond the things used to seem so all-consumingly important. Like my day job as the CTO at a data analytics company, and my weekend stress reliever of playing in a rock band. I’m proud to a part of the CHD Coalition’s fundraising efforts, and I’m humbled to be associated with these incredibly strong and generous people. By working to bring similarly affected families together – for support and fundraising – we are making all of our lives better, united for change.
I am the proud father of two incredible boys, Michael and Matthew, and husband to my best friend and wife Rachael. At our 20-week ultrasound for Matthew, we unknowingly entered into the world of congenital heart defects when the ultrasound technician and doctors at Atlantic Health in Morristown, NJ, noticed something while looking at his heart. After a ton of research and consulting with family, we decided to change all of our care to Morgan Stanley Children’s Hospital of NY, where Matthew would be born and ultimately have his surgery by Dr. Jan Quaegebeur and cared for by the amazing team there. Matthew was born on September 9th, 2015 with Transposition of the Great Arteries. TGA (Transposition of the Great Arteries), which is a condition where the Pulmonary Artery and Aorta are connected to the wrong sides of the heart. On day 6, Matthew had his open heart surgery, which were the longest 8 hours of our lives. Since waking up after surgery, Matthew has never looked back. Today he is a thriving little boy, with an incredible future ahead of him thanks to the amazing doctors and nurses who are dedicated to treating congenital heart defects.
The work by all of the doctors, nurses, and support staff really touched me and my family. Entering the CHD world isn’t something you choose or can prepare for…nothing can prepare you for the news that your baby has a problem with his/her heart, but there are people along the way to help support the families that are going through this journey. I want to use our experience to make an impact with other families that also get thrust into our world. I would be naive to think that Matthew would be alive today without the parents, families, and friends who fundraised for research before us. I believe it’s my turn to try and help improve the lives of those living with CHD and those yet to come.
It’s hard to believe that is was over 20 years ago when my daughter, Tara, was diagnosed with Hypoplastic Left Heart Syndrome. Just one day old she was whisked away to Columbia Presbyterian Hospital in NYC and days later had her first of 3 open heart surgeries to repair her heart. Those first 3 years were difficult not only for her heart issues, but also for the fact that she would not eat and had to be tube fed (very slowly) for several years.
She is now a lovely young lady in college who enjoys swimming, photography and of course, spending time on the latest social media outlet.
Throughout the years I have been involved with different local heart support organizations (both on the receieving and giving sides of comfort – and I much prefer giving). I am so thrilled to be a part of the CHD Coalition. I hope the work we can achieve will bring comfort and education to CHD families in need, that we can help fund worthwhile CHD research, and that we can celebrate medical successes and advancements that will help to improve the quality of life for those with congenital heart defects.
I am single father to a incredible young woman, Ashley. My career is as an IT Storage Engineer. After a several years of traveling globally as a consultant, the impact on my health and well being from extensive travel started to take its toll. So, I decided to take a permanent position with a global firm based in New York City. After a few years of living in New Jersey, I became friends with an amazing nurse, Mickey Wilder.
It was through Mickey that I became aware of the severity of congenital heart defects, yet like most people I was not aware of the condition up to this point. This was at a time when I was ready to start giving back to the community. After meeting everyone involved with the CHD Coalition, it was clear that this is a cause that I wanted to belong to and dedicate my time.
I am the mother of 3 beautiful children, Daniel, Justin and Gabriella and wife to an amazing husband Kenneth. My husband and I were introduced to the world of CHD’s when our first Child Daniel was born on March 11, 2003. At 36 hours old Daniel went into respiratory distress and was soon diagnosed with Hypo-Plastic Left Heart Syndrome.
It was a whirlwind that first couple of weeks of Daniel’s life, seizures, mistakes made in the NICU that caused a burn from the inside to the outside of Daniels body, and then a time where we were told our son was not coming out of a medically induced coma and that surgery might not even be an option. Things soon changed, Daniel did wake up, went on to have 3 open heart surgeries and is now a happy boy who enjoys Lego’s, Dolphins and Whales and smiling with a big smile that could just melt your heart.
Right around Daniel’s first birthday Ken and I decided to do a fundraiser to raise money for CHD research, which became a yearly occurrence. After the 3rd Tricky Tray held in our back yard had 150 people in attendance and raised over $15,000 we decided it was time to take the next step in fundraising and to become a 501(c)3. We joined forces with some other CHD families and an amazing nurse who cares for our children and started an organization here in Northern New Jersey, which is now called the Congenital Heart Defect Coalition. I look forward to seeing where this organization will be 5 years from now and how much money we have raised, not only for CHD research but also to support the families affected.
I am a Pediatric Cardiology nurse, and have worked in outpatient Pediatric Cardiology for 19 years. Prior to that, I worked in the NICU for 18 years, often taking care of newborns diagnosed with a CHD.
I have been fortunate to belong to several organizations that serve the CHD community. For 10 years, I was the Head Nurse of the Hope with Heart camp in New York. The residential camp program allows children with moderate-to-severe CHD a safe place to experience the joys of childhood and friendship. I am also a member of the Heart Care International Team. The team travels to developing countries to bring education, intervention and surgery to those children & families affected by CHD. I have traveled with the HCI team for 11 years.
Since 2007 I have had the pleasure to be in a support/advocacy group to help families affected by CHD. It has been a privilege to work with such amazing, dedicated and courageous people in the cause to improve the quality of life for all those affected by CHD. The parents and children have become ‘my Heroes!!’
I have been married to my husband Glenn for 31 years, and we have three daughters. Our oldest daughter has Type 1 diabetes and is dependent on an insulin pump for survival. Our youngest daughter has multiple learning disabilities and attends a specialized school. The world of ‘special need’ is not unfamiliar to me.