Today is the first, official day of CHD Awareness Week. This week's blog entries will each feature lists of 7s relating to CHD. We hope you will enjoy it, maybe learn something new and pass it on! Quite a few friends are participating in this effort, and we want to thank them in advance for their stories, photos, shared memories and other information.
Today's entry features 7 beautiful people who have broken, mending or mended hearts as a result of CHD. Each has a unique story and has faced many challenges of CHD. Some have more challenges to face. No two have the same results from CHD, but all have the same common goal - making the most of the heart they have been given!
Jameson is a 16 month old with Hypoplastic Left Heart Syndrome. She is a loving and happy toddler, full of hugs and kisses, and an absolute joy to be around. Her first open heart surgery took place when she was 4 days old, and her second at 4 ½ months. After her second surgery, Jameson began to grow stronger every day. Lately, though, she sometimes gets easily winded when she is cruising around, and her stats are chronically lower than normal. Other than that, the scar that is hidden under her shirt is the only proof of what this little girl has been through. Her third surgery (the Fontan) will be in April.
Lauren was diagnosed with Tetralogy of Fallot at birth. Her parents were told that she probably wouldn't make it and I was taken by ambulance to UNC Chapel Hill where I had open heart surgery at a week old. There they performed a temporary repair that lasted until she was 17. Lauren then had another surgery to close up the shunt and perform a homograph pulmonary valve replacement. Her family and friends have always been very supportive and treated her as an equal to her sister, who has a healthy heart. She now is the co-coordinator of Mended Little Hearts in Central Virginia, and is grateful to have been given the opportunity to live and help others. At age 36, there is always a probability that she will have to have another surgery, but for now she is able to do anything I want to do (except be a flight attendant - she's not tall enough!).
Gabe was born in July 2006 and surprised his family with the news that along with a full head of hair, he also had a broken heart. He was diagnosed with D-Transposition of the Great Arteries, minimal Pulmonary Stenosis, and a bicuspid valve. He has undergone two open heart surgeries to repair his heart, and now has pulmonary stenosis due to the nature of his second repair. His family has high hopes that he will outgrow it and that if any intervention is needed, it will be in the cath lab. His mom says he disobeys her with glee, and is a "blur these days... ever moving!"
Sydney was diagnosed with Tricuspid Valve Atresia (TA), meaning her tricuspid valve did not form. Without it, her blood was unable to flow into her right ventricle, enabling growth, leaving her with a 3 chambered heart. She had her first surgery when she was 8 days old and her second at4 months. At approximately 2 ½ years of age, Sydney will have her 3rd surgery, as long as everything continues to progress as planned. She will never be “fixed” unless a way of creating a new chamber is discovered through further research.
Harlie has Goldenhar Syndrome, VACTERAL Association, and Congenital Lobar Emphysema. Harlie’s heart defects are: L-TGA, VSD, intermittent 2nd degree heart block, small right ventricle, and 2 small Superior Vena Cava’s. She was also born with a mass in her chest, and a variety of other physical anomalies. To date, she has had 7 surgeries and spent over 4 months total in the hospital. Despite everything, she is one of the sweetest and happiest babies you could ever hope to meet. In the past two months she has learned 21 signs, and loves show off her new communication skills, which include putting two words together. She hardly ever cries and is absolutely beautiful - your heart just melts when you meet her!
Claire is currently in the hospital with RSV - send positive energy and prayers her way! She was born with TGA and VSD, as well as a faulty valve, which resulted in her having to have a Rastelli Repair, which uses artificial material inside and outside the heart to create the figure eight necessary for normal oxygenation of the blood. If all goes as expected, Claire should be able to act like any other child. Though she will have to have at least a couple of conduit replacements as she grows, there is a bright side there as well. The conduit replacements are not quite as "invasive" as they are at the front of the heart, research on expanding the conduits without open heart surgery to prolong the time before replacement is taking place and there is the possibility through stem cell research that a conduit could be grown from Claire's own cells that would grow with her.
Sadie came into the world screaming, but quickly turned blue and was taken from her parents. She was diagnosed six hours later, when she was critically ill, with TGA, ASD and VSD. She received a catheturization that night, and took 11 days to stabilize enough for the surgery that was required for her survival. Though she suffered drastically from drug withdrawals after surgery, she quickly healed. Today she is a strong-willed bundle of energy. She will continue to receive annual cardiology check ups, but there is a very good chance that no further invasive procedures will be necessary in her life time.
