Monday, February 7, 2011

CHD Awareness Week

Today starts the first day of Congenital Heart Defect Awareness Week. I have added a few tabs at the top of this blog, including an "about Lu" tab, and others, to honor our CHD warriors.

Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be ...grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research. (

7 months ago, I did not know that or any of the other surprising facts about CHDs. As a parent of a child born with a congenital heart defect, it is my responsibility to raise awareness about this very serious and common birth defect, in the hopes that it might save a child's life.

My daughter, Lu, was very lucky that she was able to have a successful heart surgery to repair her defects, but not all families are as lucky as ours. This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Part of the reason for this is that most of the defects are not detected in utero or at birth. Some babies are diagnosed in time for treatment and, sadly, some are not.

There is much research to be done and it all starts with awareness. 

If you are part of the Facebook community, please see our CHD Awareness Week Event HERE and post our logo as your Facebook profile picture, in order to inform people and to honor all of our CHD survivors and angels!

Tuesday, February 1, 2011

Media Coverage of Lu's Journey and CHD Awareness Week/Month

As parents of a child with a Congenital Heart Defect, Matt and I have always felt that it was our responsibility to help raise awareness in order to inform people, especially new parents, about this common disorder. If more people know about CHDs, hopefully, less tragedies will occur and more funding for research will be possible.

Last week I spoke about Lu's story with Susan Jenks, from our local newspaper, Florida Today, and it was published in today's paper. There is also a short video interview on Florida Today's website. You can see the entire story online HERE and the video HERE.

Front Page
Life and Health section front page

Life and Health inside

We are also trying to raise awareness by promoting Congential Awareness Week/Month. The month of February is CHD Awareness Month and Feb. 7th through the 14th is CHD Awareness Week. I am holding a Facebook "event" with the goal of spreading vital information about CHDs.

During CHD Awareness Week, I will posting facts, videos, photos, stories, etc. on my Facebook wall, in hopes that people will follow my posts and share them on their walls, and ask their friends to share as well. It would make a huge difference in the amount of people who are aware of CHDs and could help several children in the future if everyone could get involved. Please share this event, invite your friends, and encourage them to do the same.

Matt is also designing a logo that we will ask people to post as their Facebook profile picture for that week.

Here is the link to event: 
CHD Awareness Facebook Event

In other news, Lu is doing awesome. She turns 7 months old on Feb. 6th and weighs about 15 lbs. She is eating so well and LOVES spoon feeding. She is sitting up extremely well on her own and is rolling around all over the place. She also stands while supporting herself on a table, or our dog, Sierra. She loves to read and beat on her drum while "singing" and laughing. She also loves the bath, which she has been having in the kitchen sink lately. 

Lu is now discovering the joys of mealtime!
Reading with "Dada"

Scrub a dub dub!

Enjoying the nice Florida "winter" weather