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Audrey Claire Koch is our precious, smiling daughter, and we are amazingly blessed to have her alive with us today! This is her story – up until today, when she is 19 months old, living and thriving with Long QT Syndrome!

Audrey Claire Koch is our precious, smiling daughter, and we are amazingly blessed to have her alive with us today! This is her story – up until today, when she is 19 months old, living and thriving with Long QT Syndrome!

On March 30, 2010, Annie Grace Sabin was born with multiple heart defects.  Her official diagnosis was tetralogy of fallot with absent pulmonary valve.  Over the course of her four-month life, Annie endured four major surgeries (two requiring bypass) and multiple minor surgeries.  She was taken to the brink of death several times and continually amazed us with her will to live.  For four months, she fought valiantly to be here with us.  Her fight allowed us precious time to memorize tender…

On March 30, 2010, Annie Grace Sabin was born with multiple heart defects. Her official diagnosis was tetralogy of fallot with absent pulmonary valve. Over the course of her four-month life, Annie endured four major surgeries (two requiring bypass) and multiple minor surgeries. She was taken to the brink of death several times and continually amazed us with her will to live. For four months, she fought valiantly to be here with us. Her fight allowed us precious time to memorize tender…

Meet my amazing son Oakes: Today he is doing just fine! Oakes was diagnosed in utero with Truncus Arteriosis. Oakes has had open heart surgeries, dozens of procedures, cath lab trips, unbelievable amounts of medications, support and interventions. He has had complications and surprise diagnosis. Oakes is 11 months old, yet his story is big, and it is complex. Without a doubt part of his story is about donation. He has received donated blood, donated tissue, valves for his heart and most…

Meet my amazing son Oakes: Today he is doing just fine! Oakes was diagnosed in utero with Truncus Arteriosis. Oakes has had open heart surgeries, dozens of procedures, cath lab trips, unbelievable amounts of medications, support and interventions. He has had complications and surprise diagnosis. Oakes is 11 months old, yet his story is big, and it is complex. Without a doubt part of his story is about donation. He has received donated blood, donated tissue, valves for his heart and most…

I am 37 and was diagnosed at birth with a congenital heart defect TGA (Transposition of the Great Arteries). I had my open heart surgery (Mustard procedure) at the age of 2. Since then I have dealt with congestive heart failure and cardiac arrest. I have also experienced atrial fibrillation requiring several cardio versions and an ablation. In 2009 I received my 6th pacemaker.  My 12 year old niece was was born with DILV (Double Inlet Left Ventricle) with TGA at 3 months old. She has had…

I am 37 and was diagnosed at birth with a congenital heart defect TGA (Transposition of the Great Arteries). I had my open heart surgery (Mustard procedure) at the age of 2. Since then I have dealt with congestive heart failure and cardiac arrest. I have also experienced atrial fibrillation requiring several cardio versions and an ablation. In 2009 I received my 6th pacemaker. My 12 year old niece was was born with DILV (Double Inlet Left Ventricle) with TGA at 3 months old. She has had…

Signs and Symptoms of Long QT Syndrome

Signs and Symptoms of Long QT Syndrome

Printable list of drugs to avoid if you have Prolonged QT interval syndrome to prevent cardiac arrest.

Printable list of drugs to avoid if you have Prolonged QT interval syndrome to prevent cardiac arrest.

My son's name is Caleb and he's now 2 yrs. old with Pulmonary Atresia with Intact Ventricular Septum, Tricuspid Stenosis.   He spent the first 4 months in the hospital, awaiting a heart transplant, then ended up getting another open heart surgery instead, Bidirectional Glenn.   He's a happy 2 year old, although he will definitely need more open heart surgery, we take it one day at a time and you can't tell a thing is wrong with him by looking at him.

My son's name is Caleb and he's now 2 yrs. old with Pulmonary Atresia with Intact Ventricular Septum, Tricuspid Stenosis. He spent the first 4 months in the hospital, awaiting a heart transplant, then ended up getting another open heart surgery instead, Bidirectional Glenn. He's a happy 2 year old, although he will definitely need more open heart surgery, we take it one day at a time and you can't tell a thing is wrong with him by looking at him.

"This is Albie and he was born 23 February 2011 with a CHD (Transposition of the Great Arteries, Pulmonary Stenosis, Sub-Pulmonary Stenosis and a VSD). He has had three procedures and a shunt operation so far and we await open-heart surgery in the next few months. Its been a big year to say the least. But do you know what? Albie was born, like all of these fighters, not 'just' with a heart condition. He was born laden with many, many more gifts and he has taught me so much already. I know…

Every heart has a story – and this is his.

"This is Albie and he was born 23 February 2011 with a CHD (Transposition of the Great Arteries, Pulmonary Stenosis, Sub-Pulmonary Stenosis and a VSD). He has had three procedures and a shunt operation so far and we await open-heart surgery in the next few months. Its been a big year to say the least. But do you know what? Albie was born, like all of these fighters, not 'just' with a heart condition. He was born laden with many, many more gifts and he has taught me so much already. I know…

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