Tuesday, March 18, 2014

More Changes

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!

Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.

Friday, March 7, 2014

Stem Cells & HLHS -- New Hope on the Horizon?

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.