Friday, April 18, 2014
Dear Heart Friends:
It's time for all of us to work together. Lives are at stake! Signing a simple petition could be the difference between life and death. Are you willing to add your signature?
Many of you in the Heart World know that babies born with bad mitral valves are greatly at risk. To date, many children have benefitted from a special device known as a Melody® valve. This valve has been placed in babies and children in limited numbers because the device is not FDA approved.
This petition would allow for Medtronics, the company that produces the Melody valve® to work with the FDA to create a special valve for babies and children. The original use for the Melody valve® was not for it to be used in children, but the brilliant doctors at Boston Children's Hospital and elsewhere have been modifying the valve to save children's lives.
If the changes were made under ordinary circumstances, then it would take a while for new studies to be conducted and for the valve to be available to the babies and children who need them. This petition requests that the FDA and Medtronic work together to get the device to those who can benefit from them now, and ultimately to obtain humanitarian use approval of the device.
It will only take a minute of your time, but that one minute of time-well-spent could save a life. Will you sign the petition?
Will you share this with others? If so, today you will have done a good deed that could touch countless lives. Thank you!
Tuesday, March 18, 2014
Survivors are the people who can adapt and change. They are also the ones who recognize that sometimes when a door closes, a window opens. Sometimes it's so easy to get wrapped up in staring at the shut door that you neglect to appreciate the breeze blowing in the open window. I refuse to let that be me.
For 15 weeks I ran a radio show called "Heart to Heart with Anna" on the VoiceAmerica Health and Wellness channel. It was an hour-long talk radio show and I had Guests ranging from congenital heart defect (CHD) survivors to parents of children with CHDs to nurses and doctors who work with CHD survivors to grandparents of children with CHDs. We had an extremely informative show where we discussed topics such as the genetics of CHDs, organ donation and transplantation, losing a child to a CHD and one show devoted to our theme for Season One entitled "You are Not Alone."
As the show was coming to an end, I reached out again to the 50+ Guests I had had on the show and told them that I hadn't been able to secure sponsors or advertisers. I asked them if they knew anyone who could help us save the show.
Jessica and Amy Cowin stepped forward and set up a fundraiser to try to save the show. Keeping Heart to Heart with Anna Beating was the title they gave to the fundraiser and they explained how we needed the CHD community to pull together to save the radio show. The fundraiser is still going on if anyone would like to donate.
The problem was that I was on a tight schedule with VoiceAmerica. To give me a little more time to raise the money, VoiceAmerica allowed three Encore Presentations and Noel Cipra of VoiceAmerica was even kind enough to run an article about our very last episode in the Voice America PressPass which demonstrated extra support.
Sadly, despite our best efforts, we didn't raise enough money to stay with VoiceAmerica. I had become accustomed to having my own sound engineers, an executive producer I could call upon if I needed to or the the general manager. They were always just a phone call or an email away. I started looking for an alternative. Completely ending the show wasn't the answer.
"Heart to Heart with Anna" has found a new home! You will find Heart to Heart with Anna on BlogTalkRadio and I'm thrilled. It means that I will now be my own engineer, producer and host, but thanks to Jessica and Amy, we have enough money for another year of "Heart to Heart with Anna."
I'm taking a brief hiatus to learn how to work my studio and to figure out how to bring over all of my shows from VoiceAmerica. Change is difficult. Change is challenging, but change is good. I think that by focusing our energy on how to make our show the best it can be on BlogTalkRadio, it will be a change for the better for everyone!
Special thanks to Callie Rickard, Baby Hearts Press' graphic artist who came up with an entire array of possible logos for our 2nd season. Extra special thanks to the CHD community who came forward and voted for their favorite logo. We had over 160 people vote in about 36 hours and the winner was this precious little boy holding onto the heart-shaped balloon during a sunset. I told everyone that our theme for Season Two is "There is Hope! and one of my heart friends, Prossy Najiuma Amal, said, "New hope as the sun sets." I couldn't have said it better.
Meanwhile, I had the pleasure of being a Guest on Marie Biancuzzo's talk radio show "Born to Be Breastfed" with fellow heart moms, Nancy Sands and Amy Gerrish Bennett. You can listen to the show by going here: Born to Be Breastfed on March 31st at 5:00 p.m. CDT. Marie Biancuzzo, RN debunks the myths surrounding breastfeeding a CHD baby.
"Heart to Heart with Anna" will begin airing on BlogTalkRadio starting April 1st at 2 p.m. CDT -- no fooling!
Friday, March 7, 2014
Dear Heart Friends:
I have some very exciting news to share with you! The Mayo Clinic has developed a clinical trial to determine if the use of stem cells in children born with hypoplastic left heart syndrome (HLHS) can help the heart to grow stronger -- perhaps preventing the need for transplant in the future (Mayo Clinic HLHS Stem Cell Trial)
This is very exciting news for moms who find out in utero that their baby will be born with this life-threatening heart defect. At the time of birth, the doctors would harvest blood from the umbilical cord, take the stem cells and culture them so that when the baby has the second staged surgery, they can inject those stem cells into the right ventricle to see if they will help the heart grow stronger. This would beef up the right ventricle to make it strong enough to support the life of the child for a very long time -- possibly preventing the need for transplant in the future.
The study is designed to have 10 babies actually test out using the stem cells to see if it's a feasible study and if it actually helps the babies' hearts to grow stronger. This is the first time the Food and Drug Administration has approved a study using stem cells in the pediatric population.
While I am very excited about this study, I can't help but wonder why these doctors wouldn't seed both sides of the heart to see what happens. I understand wanting to make the right side stronger, but if they could improve the pumping abilities of both sides of the heart, then perhaps these babies could develop two strong pumping chambers, thus eliminating the need for the Fontan Procedure. While having one really good, strong pumping chamber is an asset and might stave off the eventuality of having a heart transplant, having a four-chamber heart is far more ideal. The Fontan Procedure has saved many people -- including my own son -- so I don't discount the importance of this procedure for saving lives, but it's not a cure. It's a palliative (temporary fix) procedure and it comes with its own set of risks and long-term problems. The ideal situation would be to have a 4-chamber heart with all of the pumping chambers working properly.
This is a very exciting clinical trial and I will be watching to see what happens. I believe that studies such as this one have the opportunity not just to make a better Fontan heart, but to eliminate the diagnosis of HLHS forever. The day will come when doctors have the ability to re-engineer the human heart to repair the mistakes that happened in utero. Will it be with stem cells? Will it be a genetic reconfiguration? Or will it be some other way which we haven't even thought of before? The way we're going to get there isn't clear yet, but the one thing that is certain is that scientists are unlocking the mysteries of the human body and with it the ability to possibly help the body heal itself.
Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.
Friday, February 28, 2014
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 appétit!
Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.
Friday, February 21, 2014
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 http://www.healthnewsdigest.com/news/Heart_Health_410/Compound-improves-cardiac-function-in-mice-with-genetic-heart-defect.shtml "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: http://www.jbc.org/content/288/25/18335.
Friday, February 14, 2014
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: http://www.change.org/petitions/the-american-heart-association-to-designate-100-of-funding-the-aha-receives-from-mini-heart-marathons-jump-rope-for-heart-and-advertising-using-children-born-with-heart-defects-to-congential-heart-defect-projects/suggested_petitions 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.
Monday, February 3, 2014
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.
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!