"The best and most beautiful things cannot be seen or touched-they must be felt with the heart." Hellen Keller

Wednesday, February 1, 2012


Well as you all know, it is February 1st and the start of Heart Month. A month that in the past really meant very little to me. I always assumed it was really for those who had suffered heart attacks, older people, etc.... But NOW, it is near and dear to my heart. It is ironic that today is the start of Heart Month and today Bryson had his 6-month checkup with the cardiologist....how is that for timing?
I am glad to say that the cardiologist said my boy was FABULOUS! Can you believe he is already 3 feet tall?!? It was funny because there were boys in the waiting room that were 3 and 4 and they were just talking to each other and then here is Bryson, taller than they were and grunting and pointing. They probably thought, "man, what is with that kid?" He will talk someday, I just know it! Hee, hee. Anyway, even the nurse said, "he looks a lot older than 2, he is tall!" He is such a string bean! He weighs 27 lbs, but there was a lot of wiggling going on so it might be more. Then we went back to the room and OH MY LORD, Bryson screamed and sobbed and cried like I have NEVER heard. Honestly, I have never heard him cry with such deep hurt. It was awful! She checked his stats as quickly as she could and then put us in another room and he just sobbed and then when I put him on the floor he ran to get my purse and give it me so we could leave. LOL! He was almost frantic, like a caged dog. It broke my heart and I know it bothered my mom too. I am not sure why he was so terrified. He has been there before plenty and never acted like that. He has never acted like that at the pediatricians but it has been a long time since he has been to either office. We went in the echo room and he saw fish and was happy and the very second the cardiologist walked in he screamed and melted into a puddle on the floor. Poor baby! He acted like he was going to have major surgery! He kept saying, "No mama!" So sad! My mom and I had to hold him down the entire time he got his echo. I felt sorry for the cardiologist too. He kept saying, "Bryson, I thought we were friends!" Anyway, the cardiologist said he was great! YAH! Oh and then this afternoon, out of nowhere (well it was a response from an email in 2010) I got a call from Children's and they wanted to interview me about Bryson's story. It was nice to be able to talk about it. I just need to do that sometimes. Anyway, they may include him in the newsletter so I will keep you posted. Tomorrow I am supposed to have lunch with the representative from the American Heart Association locally to talk about a Go Red luncheon we will have here at my work (for school district employees) and I am supposed to speak at the luncheon and tell Bryson's story. I tell you what, being this kid's scout or spokesperson or whatever you call it, is tough work! He is high maintenance! LOL! Anyway, it felt good to hear that everything is still fine. I know that us parents with medically complex children live our lives in increments. We live our lives holding our breaths until the next appointment, hoping that all is well and we can continue to enjoy time with our children. We worry incessantly about the appointment where it isn't all "unicorns and fairies". However, for now, I'm gonna ride a unicorn....on a rainbow....and go see a fairy! :) :) :)

Just a quick reminder that Congenital Heart Defect Awareness Week runs the 7th - 14th
Get educated - have a voice - spread awareness!
(CHD facts provided from The Children's Heart Foundation)

Incidence, Morbidity & Mortality

•Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

•Congenital heart defects are the #1 cause of birth defect related deaths.

•Congenital heart defects are the leading cause of all infant deaths in the United States.

•Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.

•Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

Lifelong Disease

•Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.

•There are an estimated 2,000,000 CHD survivors in the United States.

•For the first time, more than 50% of the CHD survivors are adults.

•10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

•91,000 life years are lost each year in this country due to congenital heart defects.

•The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.


•More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.

•There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.

•In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

•Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.

•Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

•Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

•The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.

•In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

1 comment: