Baby Maverick

This blog was created to keep family and friends updated on what's going on with the pregnancy, birth, and surgical plan for Maverick. We'll also be able to keep everyone updated during his surgery and recovery and hopefully be able to show you some cute pictures of him, Maddie, Carter and Chloe along the way.

This was the original intent; however, when we started this blog we had no idea the twists and turns our lives would take. Our sweet baby Maverick was born September 12, 2008 with Transposition of the Great Arteries, ASD, and VSD. We expected to have a baby boy to bring home three to four weeks after his surgery. He had numerous complications after his arterial switch and fought through many that would have taken the life from an adult. He passed away February 24, 2009 - without ever coming home.

This blog is now a place I share my feelings, work through the grief, remember Maverick, and try to make sense out of our life without him. I hope in doing so I am giving a name and a face to babies everywhere born with congenital heart defects.

Sunday, January 31, 2010


Back to school. This semester is taking even more time than last, if that is possible. It's good, though, as it keeps me busy. I've also been preparing for Art for the Heart. We're so excited about it, but it doesn't seem possible our sweet baby boy has been gone for almost one year. Greg and I often talk about how we really can't believe this has happened to our family, our baby. We talk about what he would be doing if everything would have been okay. Becoming involved in the CHD community has made me realize how many people are going through the same thing we are. Many others have little fighters that continue to fight daily. This just keeps me committed to bringing awareness to the number one killer of infants in their first year of life. I couldn't help but copy the facts and paste them today. They're definitely eye-opening. This info is from

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.


The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
The Children’s Heart Foundation has directed $3.6 million to 37 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
CHF has established five Chapters and has volunteers in many US states.

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.

Wow, huh? So, through my reading for school, I come across things that apply to Maverick - and of course many other children. It makes me read and research more, because I want to understand every aspect of his condition. I'm thinking of putting some of the info on here. Anyone know how to tab the top part of your blog? I thought it might be good if there was a tab for info about different conditions. Let me know - I'm not a whiz at computers :)

How do you like the new look of the blog? My friend, Dejah, had her expert computer person update it for me. I love it.


Lindsay said...

I love the new look of the blog. It's hard to believe he's been gone almost a year now. I've been thinking of you and will be sure to stop and remember my sweet blue eyed boy in a few weeks. Love you guys.


Juli said...

Thanks, Lindsay. It is hard to believe. Thanks for remembering Mav. That means alot. Tell everyone we said hello, and look me up on FB if you're on there. I couldn't find you. I'm Julianne Carter Clark.