Friday, February 28, 2014

National Nutrition Month!

March is Nutrition Month!

I don't believe I've ever celebrated National Nutrition Month before but considering how important nutrition is in all of our lives, today I shall begin!

Just a few days ago I concluded Heart Month by being a Guest on Marie Biancuzzo's show "Born to Be Breastfed" which is featured on the VoiceAmerica Health and Wellness channel. This was the perfect way to conclude Heart Month and bring in Nutrition Month since we talked about breastfeeding a baby with a heart defect!

Since it's been a while since I have nursed my baby, I decided to talk to my Facebook Heart Mamas to see if any of them would like to come on the show with me. To my delight, when all was said and done, two wonderful moms came on the show with me -- Amy Gerrish Bennett and Nancy Sands.

I "discovered" Amy when I stumbled across her contribution to a blog for an organization she created -- Sisters by Heart. Even though she wrote this article last year, it's still completely relevant today: Sisters By Heart: Nutrition Month Breastfeeding an HLHS Baby. I was overjoyed when she agreed to come on the show with me.

Perhaps the greatest surprise in the course of the show was to discover that all three of our children had the same heart diagnosis at birth -- hypoplastic left heart syndrome. I didn't realize this when I first asked them to come on the show with me!

Marie Biancuzzo was an excellent Host and she did a terrific job of drawing our stories out of us, finding pertinent information to comment on and asking important questions. I hope everyone will tune in when it airs on March 31st at 5 p.m. Central Time on the Health and Wellness Channel at VoiceAmerica.

Nutrition, especially when it pertains to a baby with a congenital heart defect (CHD), is of the utmost importance. I'm so glad that Ms. Biancuzzo could debunk some myths regarding breastfeeding a baby with a severe congenital heart defect. Many problems arise from incorrect information told to brand new moms who don't even know what to ask. Marie takes the mystery out of breastfeeding and helps everyone understand why it's even more important for our CHD babies to have mother's milk and why breastfeeding is easier on babies than feeding from a bottle.

Find out some of the common problems we mothers face when we have children having multiple open-heart surgeries in infancy, find out what nursing mothers can do when obstacles present themselves and finally, find out what the truth is regarding CHD babies and the effort needed to nurse on Marie's show.

Since you have an entire month before the show airs, I hope you'll try a new fruit or vegetable this month. Eat some foods you've never eaten before and discover that healthy food can be fun and delicious. I love to visit Whole Foods in Austin whenever I get a chance because it's easy to discover something new or a fun new way to cook or prepare healthy foods.

I hope all of you enjoy Nutrition Month. Bon app├ętit!

Please visit Baby Hearts Press at for resources for the congenital heart defect community.

Friday, February 21, 2014

New Hope Regarding Hypertrophic Cardiomyopathy?

Thanks to the Human Genome Project the world is more aware of the importance of genes and the potential to identify problems with genes and correct them -- instead of just palliating congenital conditions, now we are learning about ways to cure certain genetic conditions. It's an exciting time to watch the development of "gene therapy" and the possibilities of eradicating certain birth defects.

In 2001it was discovered that there was a gene that linked hypertrophic cardiomyopathy to the genetic conditions Noonan syndrome and LEOPARD syndrome. Hypertrophic cardiomyopathy is a condition where the heart wall thickens and enlarges for no apparent reason. Many of us are aware of the condition when we hear about athletes who suddenly pass away and it's discovered they had an undiagnosed heart defect. Hypertrophic cardiomyopathy can lead to sudden cardiac death of apparently healthy individuals.

According to an article in Health News Digest "In Noonan and LEOPARD syndromes, the thickened heart muscle of hypertrophic cardiomyopathy is caused by a defective Shp2 protein, created by a mutation in the gene PTPN11.

The mutation helped doctors to understand what was wrong, but they still didn't know what to do to fix the problem. Little was known about the biochemisty or Shp2 or hypertrophic cardiomyopathy. Dr. Maike Krenz and his team decided to test whether they could interrupt the heart's hypersensitivity to growth signals by giving a chemical compound, PHPS1 to mice with a mutated gene that produced the defective Shp2 protein.  According to Dr. Krenz, "Not only did the compound reduce the thickness of the heart muscle to the size of normal heart muscle, but it also improved the cardiac pumping of the heart."

After this experiment is conducted on humans and proves to be as effective as it is in mice, this compound could prevent those with hypertrophic cardiomyopathy from dying unnecessarily -- once the heart condition (if caused by the defective Shp2 protein) is caught early enough. 

Dr. Krenz presented the research findings, "Inhibition of Shp2's Phosphatase Activity Ameliorates Cardiac Hypertrophy in LEOPARD Syndrome Models," at the American Heart Association's Scientific Sessions conference in November 2013, where it received the Outstanding Research Award in Pediatric Cardiology.

To read the article "New Approaches to Prevent LEOPARD Syndrome-Associated Cardiac Hypertrophy by Specifically Targetting Shp2-Dependent Signaling"published in The Journal of Biological Chemistry and submitted by Christine Schramm, Michelle A. Edwards and Maike Krenz, go here:

Please visit Baby Hearts Press at for resources for the congenital heart defect community.

Friday, February 14, 2014

Happy Congenital Heart Defect Awareness Day!

Dear Heart Friends:

It is February 14th -- which of course means it's Congenital Heart Defect Awareness Day!

I absolutely love the image above because it speaks to me on so many levels.  This is definitely a day to celebrate with all of those who have survived living with congenital heart defects, but it's also a day to remember our CHD angels. Over the last 19 years, I have befriended so many heart friends whose children have been called to heaven way too soon. I love, remember and honor all of them today, too.

Our Texas Governor, Rick Perry, signed our proclamation again this year, as did so many others. I appreciate it when our government officials honor and respect our community at this very special time for us. Getting recognition and promoting our causes will help us toward our ultimate goal -- finding out what causes congenital heart defects so we can eradicate them forever!

Toward that end, a Heart Mom friend of mine, Dodi Weisbrod has created a petition and here is the link:  I know it's a monstrous link but it's for a great cause. If you've ever been upset that the American Heart Association uses children in its advertising and yet only a very small percentage of their funding actually goes toward PEDIATRIC or CONGENITAL heart defect research, then you'll want to sign this petition. This petition is designed to request that all of the money the American Heart Association earns from using children or babies in their fund raising efforts be designated specifically for congenital heart defect research -- and not "trickle-down" research, but bona fide, real CHD research.

On a much more positive note, there is much that the American Heart Association does for which the congenital heart defect community should be grateful. For many years I was a keynote speaker for the American Heart Association Heart Heroes annual conference in Florida. Pepper Adair was the director of the program and she was indefatigable when it came to serving the CHD community in Florida. She moved the conference from city to city each year in order to reach ALL of the members of the CHD community in Florida at one time or another. Programs like these are precious and need to be appreciated by the CHD community.

In addition to the free, annual parenting conference that she hosted, she also has a terrific summer camp for kids called Camp Boggy Creek. Not all parents of children with congenital heart defects feel comfortable letting their children attend a summer camp. This camp has special counselors and medical volunteers that makes the experience for the children unforgettable.

Now, I shall end this blog on a personal note. Today my husband surprised me by having a very special group of men come to the house to serenade me this morning. I hope all of you enjoy your Valentine's Day/Congenital Heart Defect Awareness Day, as much as I am!

Please visit Baby Hearts Press at for resources for the congenital heart defect community.

Monday, February 3, 2014

Heart Month

February is considered Heart Month, or as we Heart Parents like to say, 'Congenital Heart Defect (CHD) Awareness Month!'

What happens in CHD Awareness month? There are so many activities in February! Of course the one thing that united our community many years ago was when we decided to start asking our State Governors to make a proclamation asserting that February 14th is Congenital Heart Defect Awareness DAY. Here's a photo of one signed by Texas Governor Rick Perry in 2010.

It's not uncommon for members of the CHD community to come together to celebrate these proclamations and even have a photo taken with the Governor. Below is a great photo of Children's Sibley Heart Center patients, families and staff at the Georgia State Capitol with Governor Deal for their signing of the proclamation in 2013.

While this is important, what is most important is sharing information, spreading knowledge and, quite possibly, saving a life. Here's a beautiful reminder about how many children are born with heart defects everyday -- from an organization created to help spread awareness of the need for newborn pulse oximetry before babies leave the hospital.

I've written about the importance of newborn screening in another blog, but here is a chance for us to mention it again -- and to possibly save a life.

As much as we Heart Parents like to focus on our children in February, it's really heart month -- and it's for everyone for good reason. When you see how heart problems affect so many Americans, you have to open your heart to doing what you can to raise awareness about ALL heart problems. So that means that we may need to wear red, celebrate someone jumping rope for heart and above all, we need to care about our hearts and stay healthy so we can be here again next year to do it all over again. Happy Heart Month, my Heart Friends!

Please visit Baby Hearts Press at for resources for the congenital heart defect community.