Heart Beats for Benjamin

Natalie Ferry recalls being told, before her son Benjamin was even born, that he had a life-threatening heart condition.  She spent 30 minutes with him at birth and then Benjamin was taken into his first surgery at Nemours Children’ Health. Benjamin has since defied the odds and he inspires us all every day!

Benny’s heart condition was discovered when I was 18 weeks pregnant.  I was advised to end my pregnancy, but I decided to do research of my own – spending hours on the phone with NICU staff, interviewing cardiac surgeons, and consulting various medical professionals.  I knew his journey would not be easy, but most great things aren’t easy.  Benny was born August 23, 2014, and after 30 minutes of cuddling, he was taken from me. Soon IVs were placed to keep his PDA open and his heart functioning as he was transported to Nemours.  I saw my son for the second time later that evening, forcing myself to walk the hospital halls to get to him, too proud to use a wheelchair (even after only giving birth 12 hours earlier).  I was unable to hold him since he was attached to numerous wires and machines that made scary beeping noises.  At five days old, Benny had his first open heart surgery, a temporary solution to hold him over until his heart was big enough for more procedures.  Then September 2nd was the second time I got to hold my son, finally allowed to navigate the wires, and instructed on how to carefully hold him with his incisions.

Benny has a VSD which is currently corrected with a metal umbrella-like device that plugs the hole, allowing the blood to no longer flow through the hole.  This hole prevented his aortic arch from properly forming, an issue we have been working to correct with a series of “pops” through cardiac caths and even a patch of cadaver skin during his first open heart surgery.  In addition to these two deformations, Benny’s pulmonary values never fully formed, preventing oxygen from getting to his body as it should.

His entire journey has been terrifying and amazing, bundled into one.  Since being discharged from the hospital the first time, we have returned numerous times for surgeries, scans, blood work and transfusions.  Being a heart warrior is a lifetime commitment with yearly monitoring and nervous butterflies as doctors read results.  Seven heart surgeries later, Benny has the strongest heart of anyone I know!  But his journey is not done.  His doctors predict another open-heart surgery around the time he is 10, and more cardiac caths to pop open his aortic arch.  Regardless of his diagnosis and the future of scary hospital visits, we know that of all the heart conditions, we have “the best one.”  My son will live, he is growing, he is thriving.  Not all Congenital Heart Defect warriors are as lucky.

Upon meeting Benny, you would never know about his condition until he removes his shirt, showing his many scars.  Even as I type this, he is running around the pool, squirting imaginary bad guys with a water gun, even getting me “on accident” numerous times.  His spunk, stubbornness, intelligence, and inability to stand still constantly remind me how we are the lucky ones.  He is  meeting new friends and impressing his teacher with his smarts.   He loves video games, using evidence to argue his point, loving on his sister, and is constantly blasting nerf guns to protect us from imaginary threats that we didn’t even know existed.  Benny is my heart warrior.  And my heart beats for Benjamin.  We are proud to support the Heart Walk to help other families.