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*Little Jaxon is a cutie!* Jaxon is our little Heart Hero! We found out about his Heart condition when i had my ultrasound when i was 18 weeks pregnant. They kept a very close eye on our little guy for us. Ultrasounds every month and I had to have 2 fetal echo's. Jaxon was born on March 1, 2011 with Double Inlet Left Ventricle, hypoplastic right heart syndrome and pulmonary atresia. He had his first open heart surgery when he was 1 week old. He had no problems and was sent home a week and half later March 17 to be exact this day has always been very special to me and now even more! On July 22 he went in to have a sedated echo and a heart cath done get him ready for the next open heart surgery. After 3 hours of being away from my baby boy they paged us to come to the cath lab. Immediately we knew something was wrong the head nurse was pacing by the door, she came to us and said the he is crashing and they are working on getting him stable and then he will be rushed back for emergency heart surgery. The next stage of his surgery was done. Dr. Kaza his surgeon came and talked to us and he said "I was just thinking about Jaxon the other day and when they came in and told me about him I just thought oh no." He also told us "he scared the hell out of me but he definitely has someone watching over him!" I already knew he had someone watching over him he has many angels watching over him! We love all of his heart Doctors, nurses and surgeons they do an awesome job!
Meet brave heart, Asher, our courageous hero! He is our little heart warrior born October 27, 2010 with Tetralogy of Fallot with Pulmonary Atresia. We were unaware of Asher’s heart defect during pregnancy, so we were shocked and heartbroken when our sweet baby boy was born into this world fighting for his life. He has bravely endured 2 open heart surgeries and 3 heart catheterizations before his 1st birthday at Children’s Hospital of Philadelphia. He also has some developmental delays due to his heart surgeries and a PVL injury, but is making wonderful progress and reaching milestones daily through therapy. We expect him to recover like a champ and lead a life not defined by his CHD, but rather a life filled with wonder, adventure, and joy – the sky is the limit! Asher’s CHD will require life-long specialized cardiac care, along with heart surgery/procedures as he grows, but we are believing for miracle breakthroughs in medical research. Our faith in an amazing God and His powerful promises of healing give us peace and hope for this journey. He can take broken pieces and make masterpieces! Our lives drastically changed the moment Asher was born with a broken heart, but we are stronger, love deeper, and have faith that can move mountains because of this incredible trial. With every crisis comes opportunity. I have been so blessed to have joined with other heart families to offer hope, help, and healing to others through our experience and spread CHD awareness. Anna Griffin, mom of Brave Heart
Our 'sweetheart' Maddie (Hypoplastic Right Heart Syndrome, Pulmonary Atresia, Ebstein's Anomoly) has been such a blessing! Four years ago, we prenatally found out about her broken heart...she has undergone 3 open-heart surgeries and 6 cardiac catheterization surgeries and we're blessed to say she's doing awesome! CHD has changed our lives and we thank the Lord for the miracle of Maddie!
Meet Jay. Jay is our handsome little heart hero - he's spunky and spirited and full of life. Most folks who meet him have no idea that in his short life he's endured congestive heart failure, two heart surgeries, a middle of the night heart attack followed by an hour of a half of unsuccessful CPR, and a week on ECMO (a form of heart-lung bypass). He has faced many complications along his road to recovery, but is now a walking, talking, giggling, tool-toting miracle. His favorite toy is a ...
"Their stats" vs His stats "CHD" Isn't that what old people have? "Less then .03% chance of these heart defects happening." Who cares it happened to my baby - so that makes it 100% for him! "Only 60% chance of survival." Not today. PreDiagnosis: Tricuspid Artresia, Hypoplastic Right Heart Syndrome, Transposition of Great Arteries, Coarctation of the Aorta, Ventrical Septal Defect, Double Inlet Left Ventrical, his Pulmonary Artery is too big and his Aorta is too small. July 13,2010 First Open Heart Surgery Modified Norwood, Damas-Kaye Stansel, Coarch. repair,BT Shunt, ASD created Nov. 22, 2010 Pre Glenn Heart Cath Added to diagnosis: Pulmonary Stenosis, and Aorta has a "twist" November 24. 2010 Second Open Heart Surgery remove BT Shunt, Glenn Procedure, replaced 80% of his Pulmonary Artery Fontan in summer 2012 My Son is not a statistic. He is a SUPER HERO!
This is my heart hero, Bodie. When I was 17 weeks pregnant with him, we found out he had Hypoplastic Left heart Syndrome and would need multiple open heart surgeries just to survive. He was born on February 16, 2010, with more fight in his little body than we could have ever imagined. He had his first open heart-surgery (the Norwood) at 5 days old, his second (an emergency shunt revision / pacemaker) at 2 months old, and his third (the bi-directional Glenn) at 7 months old. He spent 5 weeks in the hospital after his first surgery, 11½ weeks after his second due to hospital acquired infections and only 5 days after his third! Despite his incredibly rough start, spending 4½ of the first 5 months of his life in the hospital, he has truly defied the odds and is now doing amazingly well. He looks and acts just like any other little boy – all rough and tumble and boundless energy! He continues to inspire us and we are grateful every day that God chose to bless us with Bodie. You can follow our journey with our little inspiration at www.hopeforbabybe...
All that we love deeply becomes a part of us. -Helen Keller