I like to do things like this. In the past, I knit and crocheted for Bridget's Cradles. I blogged about it. http://www.thecabincountess.com/2015/06/my-experience-making-bridgets-cradles.html I found it made me sad. I knew parents who lost children could benefit from this, but I had to take breaks from doing it. I was very happy to discover the Little Hats, Big Hearts program. I have a special reason to support this cause. My sister's little granddaughter Amelia was born with a heart defect. Today she is an amazing outgoing eight year old who is active and happy, but she went through a lot. Thank goodness for technology, gifted surgeons and a wonderful supportive loving family.
I asked for information about Amelia's heart history because I wanted to write the proper information and do it justice. This is the information her mom Andrea provided.
Amelia's congenital heart defect is called atrioventricular septal defect (also known as AV Canal defect or endocardial cushion defect). In a nutshell, this is a a large hole in the center of the heart, comprised of an atrial septal defect (ASD; a hole in the wall separating the atria), ventricular septal defect (VSD; a hole in the separating the ventricles), and a single AV valve, rather than two separate tricuspid and mitral valves. Because she had all three of these issues present, she had/has "complete atrioventricular septal defect".
In a normal heart, blood flows from chamber to chamber in one direction through the left and right sides of the heart. With an AV canal defect, blood flows through the ASD and VSD from the left side of the heart to the right side (a "left to right shunt"), which causes more blood than normal to pass through the right side of the heart. Because of this, the left side of the heart to become enlarged and more blood than normal has to be pumped to the lungs. Over time, the extra blood flow causes the lungs to become filled with extra blood and fluid and leads to congestive heart failure. Also, because of the malformed single AV valve, blood may leak backward from the ventricles to the atria (regurgitation), which causes the heart to need to work even harder.
Amelia started going into congestive heart failure at 10 weeks, and was placed on diuretics to continue to allow her to grow, which meant her heart would grow and would be "easier" to operate on. She had her open heart surgery at 4 months old during which the surgeon placed a patch on the ASD and VSD and then created two separate "man made" valves into a mitral and a tricuspid valves.
She sees the cardiologist annually for a check-up. During this time he does an electrocardiogram (ECG) to look at the electrical activity of her heart and an echocardiogram (echo) to look at the structure of the heart, mainly focusing on the function of her "abnormal" valves. Currently, she has minor mitral valve regurgitation, but it has not gotten worse to date. The risk is that over time, the valve could become stenotic (lose function) at which point she would need further treatment or the valve replaced completely.
The "good" side of all of this is that it doesn't seem to hold Amelia back in any way! As you know she does soccer, dance, gymnastics, cheerleading and now skiing! She is very well aware of her "brave scar" and "special heart" and we talk about it as a badge of honor of her strength and courage. She truly is our "miracle baby"!
My nephew John and his wife Andrea have written a complete blog post of their journey. If you would like to read it in it's entirety, here is the link. It is an emotional read.
http://ouronlysunshine.blogspot.com/2009/05/amelia.html
