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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!
Emily was born "healthy" on June 20, 2005. At 14 months old, she became big sister to Madelyn, who was born with a Critical Congenital Heart Defect. Despite our resquests to have Emily's heart tested, we were told it was next to impossible for Emily to also have a heart defect. In February 2008, I had a dream that a murmur was discovered in Emily's heart during a routine check-up. A day or two later, this dream became a reality. During a routine pediatric exam, a murmur was discovered in Emil...
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
We are a family full of CHD, myself and my three biological children all live with Long QT Syndrome. We did not know until my second son, Cache was born. He saved our lives and many others. He is our hero!
Our Angel Aaron was born April 19, 2011 and lived to the tender age of 2 1/2 months when he left us to return to his heavenly home on July 7, 2011. He was diagnosed in utero with Hypoplastic Left Heart Syndrome. When he was born he was stabilized and then transferred to the local Children's Hospital where they decided he really had Hypoplastic Right Heart/Tricuspid Atresia/Transposition of the Great Arteries (TGA). He had his first open heart surgery at 1 week old. He did great in his recovery until he had reoccurring bowel issues (NEC) that kept him in the hospital. He spent a majority of his short life there was able to be home with us for about 2 weeks before the PICC line he had gave him an infection which took him from us. We are so grateful to have had this Heart Hero in our lives and can't wait to be with him again! We hope that because of him we are able to help spread more awareness on CHDs.
My heart hero, Chase, was born in 2009 with Hypoplastic Left Heart Syndrome (HLHS). Two heart surgeries, two bronchoscopies, two heart catheterizations and two minor surgeries later at MUSC Children's Hospital, he's the strongest person I know! He is the biggest blessing and greatest inspiration in my life and I thank God every day for the privilege to be his mama!
Our beautiful Claire was diagnosed in utero with Tetralogy of Fallot and Pulmonary Atresia. The months leading up to her birth were scary and nerve-wracking, but we feel so blessed to have known ahead of time so that we could be as prepared as possible for this special little girl. Claire was born on 10/11/10 and was pink, but had a rough start after suffering a cardiac arrest on her 2nd day of life, due to a pericardial effusion. The next week and a half were extremely difficult, but she p...
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!
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...
He has had two open-heart surgeries. One diaphragm surgery. Two cardiac catheterizations. Countless echocardiograms, EKGs, blood draws and chest x-rays. He sported a feeding tube through his nose into his tummy for four months to help him gain weight. He has spent 75 days in the hospital. And he’s only five. He is not only our heart hero, he is our hero and his name is Luke. Luke was born with only one ventricle, which without intervention, would have failed very early in his life. His heart will never be like yours and mine, but his heart has taught us more about love and faith and perseverance than we could ever have expected. Luke will need a third open-heart surgery in the next couple of years and he will need life-long medication and care. Our Luke would not be here today without the passion and knowledge of doctors who pursue better care and technology for kids like Luke. And the more we can spread the message about heart defects, the more funding, which leads to more research and better outcomes for these kids. Giving these kids every opportunity to live a full, long life is worth advocating for.