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.

Friday, May 1, 2009

Finding My Place, Awareness, and Web Sites

I've been searching around on the computer tonight for a place that I can help. A place to join and help make a difference in the lives of babies and children affected by congenital heart defects. I haven't found my spot, yet, but I'm looking. Here is a statistic I thought you might find interesting.

In the U.S., 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.

Here is a petition I signed tonight. I copied it from another site. It would be wonderful if you'd take the time to sign it, too. There are many interesting facts listed below.

Petition for Global Media Awareness of CHD

Please visit this site:
And sign this petition:Media Awareness for CHD ( Congenital Heart Defects )

Background (Preamble):
*Congenital heart defects are America's #1 birth defect.
*Nearly one of every 85 babies is born with a CHD in the US.
*Congenital heart defects are the Number 1 cause of birth defect related deaths.
*This year almost 40,000 babies will be born with a congenital heart defect in the US.
*4,000 of them will not live to see their first birthday.
*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. *Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded. 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.
*More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
*There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
*In the U.S., 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.
*Statistics today show that due to misdiagnosis, lack of knowledge and awareness, & complications of surgery…about 51% of deaths caused by CHD are children under the age of 1 year.
*Early diagnosis is the key to survival!
*For nearly 40 years, newborn screening programs have provided an important public health service by identifying newborns with metabolic, hematologic and endocrine disorders as well as hearing loss. But did you know there is also a test that could identify a congenital heart defect immediately? This painless, non-invasive test is an echocardiogram and it could dramatically increase the survival rate for children born with CHD.

Due to these alarming facts, we the undersigned urge the Media to start helping in raising Awareness whether it will be my magazine and newspaper articles, books, info shows and commercials.

Thank you so much for taking the time to read this petition and care so much to sign it. It it truly being appreciated.WE NEED TO MAKE CHILDRENS' HEALTH ISSUES OUR PRIORITY !If you would like to learn more about CHD, please visit the following great pages :

God bless you :)*Sandra Kay,- Founder of "Matters of the Heart", and "Angelina's -Warriors of CHD Awareness"Petition:Due to these alarming facts listed above, we the undersigned urge the Media to start helping in raising Awareness about CHD. We need to educate the public and demand mandatory heart screenings for all babies in utero!Media Awareness should come in all ways, whether it will be by radio, magazine and newspaper articles, books, movies, info shows and commercials. More ATTENTION and AWARENESS has to be given to CHD by the Media NOW !We need to step in and step up to the plate for the health and future of our little ones.

Love you all, jc


Bill and Mary said...

Juli ~ you are awesome!

Anonymous said...

Just wanted to tell you that you have a beautiful family and that I miss you guys!

I look forward to reading your posts and haven't missed one yet!

Tell everyone I love them!

- Dakota Champeau

Anonymous said...

Tonight's message at church once again had me thinking of you. We are still in the series, "Can you see Him", and this message was about seeing Him in difficult circumstances. If you can, check it out this week. By the way - Craig is out of town, so the pastor was a guest from People's Church. While I am not going through anything like you are, we are going through our own difficult circumstances, and this message was good for me to hear.
Still praying...

Juli said...

Dakota - we miss you. Come see us sometime.

Jaime - you must have been praying again. We slept in on Sunday. When I got up, Maddie had Life Church pulled up on the internet and I watched the sermon you are talking about before I even read your post.