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October-December Podcast Schedule

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We only have 12 Tuesdays left until 2019! We have decided to remaster some older episodes so that they sound better than ever! We know how busy everyone is at the end of the year with the holidays and with all of the end-of-year activities. We hope you’ll tune in to hear some of these special shows and be ready for a whole new format in 2019.  Here is our schedule until the end of the year:

October 9th

October 16th

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Cora’s Law and Why It’s Important

October 23rd

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Snowflakes: How Each Heart is Unique

October 30th

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Non-Cardiac Health Issues for Survivors with Complex Congenital Heart Defects

November 6th

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What is Normal Child Development in Children with Complex Congenital Heart Defects?

November 13th

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Congenital Heart Defect Advocacy

November 20th

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Rainbow Babies: Pregnancy After Losing a Child to a CHD

November 27th

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Sports and Boys with Critical Congenital Heart Defects

December 4th

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Breastfeeding Your CHD Baby

December 11th

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Working Dads versus Stay-at-Home Dads

December 18th

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Babysitting and Daycare for CHD Survivors

December 25th

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Making Memories Everyday with our CHD Families

Special thanks to all the artists at Pixabay for all of the awesome images used in our schedule.

 

Reaching 200 Broadcast Episodes, Finishing Season 12 and Looking to the Future

During Season 12 of Heart to Heart with Anna we examined the topic of Organ Donation and Transplantation and during the season we reached Episode #200!!!

Heart to Heart with Anna aired its first episode on 11/12/13 — making it a very easy date to remember! We will be in lucky Season 13 when we celebrate 5 years on the air (meaning “on the Internet”).

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Thanks to gfkDSGN at Pixabay.com for the heart

 

Although we have technically completed all 13 episodes of Season 12 about Organ Donation and Transplantation, as often happens, we had people suggest other shows that needed to be part of that season. Therefore, we will broadcast a few bonus episodes before closing the books on Season 12. Today and next week you’ll meet Jordan D. Marcia, an amazing survivor of a life-threatening condition known as “plastic bronchitis.” What Jordan has survived and how he continues to thrive is a testament to the strength of the human spirit and the will to survive.

Looking to the future we are very excited to announce that we will no longer have a particular theme per season. We realize that while we may get excited about having a theme for each season, not all listeners enjoyed the themes and would sometimes not listen to the podcast for an entire season. So we’re going to shake things up! Starting in Season 13 we’ll be having a variety of topics and we’ll continue to have the same great half-hour (give or take 5-10 minutes) of programming with excellent Guests from the congenital heart defect community.

Why don’t you join our Heart to Heart with Anna VIP Group on Facebook? You’ll get a chance to find out about what our show topics will be, have a chance to be part of a select studio audience for some shows we’ll be doing with an audience Q & A following the interview and more! It’s free, it’s fun and it’s a great way to meet other people interested in helping the congenital heart defect community.

Baby Hearts Press Literary Awards Competition

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Baby Hearts Press is excited to announce that we are hosting our inaugural Literary Awards Competition in the categories of Memoir Writing and Children’s Books for previously unpublished manuscripts. The top prize for the 1st Place winner of each contest will be $100 plus the opportunity to work with Baby Hearts Press in consideration of having the book published by the publishing company. The 2nd place prize is $50 and 3rd place will be $25. For more details on the rules and guidelines, visit our website.

Baby Hearts Press is dedicated to providing resources for the congenital heart defect community and has done so since 1997 when Anna Jaworski first wrote and published Hypoplastic Left Heart Syndrome: A Handbook for Parents. Shortly after that book was written, it was reviewed by Library Journal and orders for the book started appearing from all over the world. The book was then featured in a special cardiology review section of Library Journal a couple of years after that and the book demonstrated a need for books specifically for the congenital heart defect community.

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In 1999 Baby Hearts Press published The Heart of a Mother — stories by women affected by congenital heart defect from around the world. The book had over 60 contributors and some of the women have gone on to have additional works published in other books and magazines. It was the first time a book like this had been published for the CHD community.

 

MBNOBaby Hearts Press also published its first children’s book. My Brother Needs an Operation is a story based on the life of Joseph Jaworski, big brother to Alexander. Alex and Joey show what life is like when a big brother is left behind while a little brother has to have surgery. Lovable K.C., their toy poodle, is Joey’s constant companion and she is also affected by the changes that occur due to Alex’s hospitalization. The book has become a staple in many heart families’ homes when they have to leave children behind because one of the children needs an operation.

hof300The Heart of a Father: Essays by Men Affected by Congenital Heart Defects is the companion book to The Heart of a Mother and many of the contributors to the book were the husbands of women who had contributed to the mothers’ book so readers were treated to seeing what had happened to the children they had read about almost a decade later. Many of the stories present a picture of hope since most of the children written about in The Heart of a Mother were not expected to survive to adulthood.

Baby Hearts Press is ready to discover some new authors! Will you be one of them? The deadline for the manuscript contest is midnight December 8, 2018, Central Time (USA).

 

Heart to Heart with Anna Update

It is April 2018 and I have a lot to update everyone on regarding the show.

 

 

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Anna and her mother Carol after she mostly recovered from having Bell’s Palsy

 

Many of you are Facebook friends with me and you’ve been through the last 6 months with me of seeing how my mother fell ill and then passed away. It has been a difficult time for me. I am bereaved. I am sad. I am also at peace. My mother left this world exactly as she wished to — very peacefully in her sleep with my sister and me by her side. She wasn’t in pain. She simply went to sleep and didn’t wake up.

 

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This is the meme for Season 11 Episode 13 featuring Sapir and Idan Liben

 

Today (April 10th) marks the conclusion of Season 11 of “Heart to Heart with Anna.” It’s hard to believe we have already finished the season devoted to Heart Warrior Siblings! We interviewed all kinds of siblings and overall the results were inspiring. Children are resilient and families find creative ways to be there for all of their children even when one of the children is born with a congenital heart defect and even when their Heart Warrior passes away.

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Next week we will have a LIVE show! It’s been quite a while since our last LIVE show. We will be featuring Mary Kay Klein and Anna-mary Geist. We will be discussing the upcoming Care, Hope, Discover 2018 conference to be held in Boston on May 5, 2018. It will be a very interesting congenital heart defect conference and people will be attending from all over the United States!

 

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Thanks to Alexas_Fotos on Pixabay.com for this darling photo

 

We will have a mini-season between Season 11 and 12 where we will interview people around the world in both English and their native tongue. We are very excited about how this underscores our mission as part of the HUG (Hearts Unite the Globe) Podcast Network of bringing programming to members of the congenital heart defect community around the globe. Don’t miss our first Dutch, Hebrew, and Urdu shows!

 

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Thanks to geralt at Pixabay.com for this interesting illustration.

 

Season 12 will focus on Organ Donation and Transplantation. We have a new Guest checklist and a video to help you if you’d like to come on “Heart to Heart with Anna.” You can see the video on our HUG Podcast Network website.

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Photo by Hanny Naibaho on Unsplash

Many thanks to all of you who prayed for my mother, my family and me during this difficult time. We felt surrounded by so much love and really appreciate the kindness everyone has shown us.

Happy Holidays!

We at Hearts Unite the Globe and especially Heart to Heart with Anna wish you all the happiest of holidays!

We have put together a Year-End Letter to help you all see some of the amazing things that have happened this year. That letter took many hours to compile. Special thanks to Lisa Johnson and Nancy Jensen for their artwork, formatting experience/expertise and proofreading help. Also special thanks to Hearts Unite the Globe Board Members Laura Redfern and Laura Schleicher for their advice and editing assistance with this project.

Hearts Unite the Globe has two major projects right now. The one that most people know about is the production and hosting of podcasts for the congenital heart defect and bereaved communities in the forms of Heart to Heart With Anna, Heart to Heart With Michael and Heart to Heart with Nicole and David. In our Year End Letter we mentioned what happened this year with these projects and acknowledged some of the many people who helped us bring about Heart to Heart with Anna’s Seasons 9 and 10, as well as her Spotlight on Cardiac Athletes! We also mentioned how Heart to Heart with Michael is concluding its first season for the bereaved community. Finally we mentioned how Heart to Heart with Nicole and David created four special presentations — episodes by adults with congenital heart defects for adults with congenital heart defects.

To make the letter manageable, we decided to thank our Guests and some of our Volunteers en masse; however, I feel it’s very important to give credit where credit is due. Therefore, in this blog it is my pleasure to recognize our Guests, Guest Hosts and Volunteers.

The theme for Season 9 of Heart to Heart with Anna was Advancements in Pediatric Cardiology and episode 1 featured Heart Mom, Jennifer Gutman sharing her experience with her HLHS child receiving stem cells at Mayo Clinic. Episodes 2 and 3 featured veteran nurse Deena Barber giving us a concise perspective on the development of pediatric cardiology as a field. Dr. Fred Wu also starred in consecutive episodes (4 and 5) informing us about the significance of the liver in Fontan patients. Dr. Wu was also instrumental in helping us locate a French-speaking expert after a request for the information to be provided in French by a Listener. Heart Mom, Isabelle Allain was the Guest Host for Heart to Heart with Anna’s first French program which featured Parisian pediatric cardiologist Dr. Magalie Ladouceur. Dr. Gil Wernovsky was then featured in a double episode (6 and 7) describing his innovative design of a roadmap to success for those born with complex CHDs. Dr. Wilson Lam, returned to the program to give us an update on advancements in electrophysiology in Episode 8.  Susan Romanesko and Michelle Steltzer were a dynamic mother-daughter duo (respectively) sharing a historical perspective on what it was like to be the mother and sister to Greg, born with a single ventricle heart in the 1970s and how Greg’s condition affected Michelle’s career choice. Dr. Peter Ermis was the featured Guest in Episode #10 about family planning for CHD Heart Warriors. Many advancements have been made in understanding the psychology of living with a CHD and Dr. Adrienne Kovacs was the featured Guest for Episode 11. World-renown pediatric cardiology heart surgeon Dr. Edward Bove was the Guest for Episode 12 about Advancements in Treatments for HLHS Heart Warriors and bringing the season full circle, we ended Season 9 with Episode 13 featuring Dr. Timothy Nelson sharing Advancements in Stem Cell Therapies and Research for HLHS Warriors. To our delight, we were able to provide a bonus episode with Dr. Wayne Franklin who shared information about Advancements in Pulmonary Hypertension — an episode which has improved the quality of life for one of our Volunteers (see Year-End Letter for more on that!)

Those of you who are Harry Potter fans will understand our next mini-season — we called it Nine and Three Quarters (those of you who are not fans — this is the name of the train platform which takes students to Hogwarts). We had a number of Guest Hosts including: Carol Raimondi (interviewing her friend Rosalyn Rivera about being a Heart Warrior and a nurse), Rita Scoggins (interviewing Laura Ryan about raising children as a Heart Warrior) and Laura Ryan (interviewing her friend Kathy Ware about early-onset menopause for Heart Warriors). Anna interviewed long-time friend, Yarrow Gillis about the emotional toll of living with CHDs. Carol Raimondi completed the mini-season by interviewing Frank Lynn and Terese Quarino about strokes and TIAs amongst Heart Warriors.

Season 10 focused on Education for Heart Warriors and featured the following Guests: Episode 1 – Jennifer Weiner (physical education), Episode 2 – Andrea Quirk and Chelle McIntyre-Brewer (education for heart warriors with parents in the military), Episode 3 – Erin Ayscue (special needs homeschooling), Episode 4 – Yarrow Gillis (continuing education), Episode 5 – Vicki Lucas (special education transitions), Episode 6 – Katina Robalino (learning about the heart), Episode 7 – Chelle McIntyre-Brewer (homeschooling and advocacy), Episode 8 – Marie O’Donnell (special education), Episode 9 – Megan Tones (education in Australia), Episode 10 – Kathy Keller (special education transition to adulthood), Episode 11 – Lisa O’Connor (special education accommodations and IEPs), Episode 12 – Marta Montero (education for parents of Heart Warriors) and Episode 13 – Roxanne Montalvo-Tsai (educating twin Heart Warrior toddlers) and bonus episode – Jessica Gutierrez-Rodriguez (discovering Heart Warriors’ hidden talents).

Many of you have heard the Cardiac Athlete™ Spotlight Series that will conclude at the end of December 2017. For the first time ever, we’ve had a professional football player on the program and an Olympian! Many thanks to our amazing Guests: Tim Howard, Lisa Johnson, Benjamin Lee, Barry Stone, Richard Gardner, Tracie Happel, Green Bay Packer Michael Montgomery, Martin BradyAimee OsinskiNeil CollinsRoger PotterGraeme SuttonEd RucciGreg Bassett, Beth Greenaway and Olympian Paul Wylie.

There are so many Volunteers helping to make HUG what it is. We recognized many of them in the Year-End Letter, but I’d also like to thank: Lars Andrews, Victoria Baerg, Christopher Freeman, Christina Gurnham, Diane Kowalik, Leah Lowrey, Vicki Lucas, Lorraine McDaniels, Eileen Perlman, Angela Roberts, Megan Tones, Priscilla Watts, MaryAnn Zima and all other members of the CHD community who have been supportive in word or deed of Hearts Unite the Globe’s mission to bring resources to the congenital heart defect community. If you’d like to make a donation to Hearts Unite the Globe to keep our podcasts free of charge to the CHD community, please visit our website.

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Parlez-vous Français?

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Image courtesy of Sira Anamwong at FreeDigitalPhotos.net

I love getting feedback from Listeners and I received another request after our program Advancements in Understanding the Liver Part 1 and Part 2 aired. A Listener wrote in with a request — could we possibly translate the program into French?! Since I have not written much in French since I was a senior in high school, I knew the task was beyond my meager skills so I reached out to others I knew in the congenital heart defect (CHD) community.

It didn’t take me long at all to know who I hoped would help me. Many, many years ago, before the Internet was made more user friendly, we used to have listservs which were ways we could connect with others — the precursors to MySpace and Facebook, listservs didn’t have photos, videos or anything fancy. They were just notes sent back and forth to the group. One such group I belonged to was for parents of children with CHDs and that’s where I “met” Helen Bishop. I discovered that Helen Bishop was a French teacher and since my grandmother’s maiden name was Blanchette, and I’d studied French in high school, I felt another connection with her!

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In 2010 I finally published the book The Heart of a Father which is a compilation of essays by men affected by congenital heart defects. I “met” men from all over the world and I also “met” many of their wives. One of the men who wrote an essay for the book was David Simpson. His wife Helen is a French teacher in England.

I knew I had two French teachers, who were also Heart Moms to turn to. When you get some Heart Moms on a mission, you just know things will get done! I also posted a note on the Heart to Heart with Anna Facebook page and on my own Facebook page and then I had even more people offering to help.

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Dr. Fred Wu

Dr. Wu, the Guest of the original program that started this flurry of activity, is helping me identify a French cardiologist to actually record the program. A bilingual Heart Mom is going to be the Guest Host for the program. Once Helen B. and Helen S. translate the script into French, we will move forward with recording the very first French episode of “Heart to Heart with Anna.”

One of the missions of Hearts Unite the Globe, the nonprofit organization that brings this podcast to the CHD community, is to unite the entire CHD community. Creating programs in languages other than English is a step in the right direction so that we can truly be united.

 

The Roadmap to Success For Complex CHD Survivors

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Dr. Gil Wernovsky

What an honor and a pleasure it was to talk with Dr. Gil Wernovsky about his vision for the future of pediatric cardiology related to care of those with critical congenital heart defects! He has kindly given us copies of some articles that he mentioned in his podcast.

Dr. Wernovsky’s article is entitled, “Creating a lesion-specific “roadmap” for ambulatory care following surgery for complex congenital cardiac disease” and is authored by him, Heart Mom Stacey Lihn and Melissa Olen (a nurse who worked with Dr. Wernovsky). I love how he collaborated with people from all aspects of the CHD community to come up with this concept and I’m hoping it’s an idea that will catch the CHD world by storm! This is exactly what we need to reduce the stress that many of us Heart Parents feel regarding the treatment of our Heart Warriors (HW). It really is time for us to know what kinds of tests we can expect our HWs need to have and for anticipatory screening to be done, and baselines established so we catch any “consequences” of having a funky heart.

Dr. Wernovsky talked about an article by Brad Marino, M.D. et. al. entitled, “Neurodevelopmental Outcomes in Children with Congenital Heart Disease: Evaluation and Management” which is available free of charge online. This article speaks to the neurological consequences of having a congenital heart defect.

It amazes me how Dr. Wernovsky keeps track of all of the articles he’s written considering how prolific he is! I asked him if he remembered an article that was a retrospective study conducted in the 1990s and he did! This article is entitled, “Inattention, Hyperactivity, and School Performance in a Population of School-Age Children with Complex Congenital Heart Disease” and it is also available free of charge at the given link. This article was actually published in 2008 but I think it provided some important information.

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The last bit of news I am excited to share is about the Baby Blue Sound Collective. One of the most amazing things to me about this group is that the songs are written by doctors, performed by doctors, nurses, techs, and even some parents of Heart Warriors.

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Dr. Gil Wernovsky at the piano

Dr. Wernovsky even gave Heart to Heart with Anna the right to use one of the songs from the album for the podcast! So now Heart to Heart with Anna has a funky new sound! Let us know what you think about it.

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Some of the members of the Baby Blue Sound Collective

If you purchase their new CD, “Home. Tonight. Forever” the proceeds will go to The Children’s Heart Foundation which is a nonprofit organization whose sole mission is to provide funds for research related to congenital heart defects. They recently joined forces with the American Heart Association and funded more than a million dollars worth of research. What they’ve done is nothing short of miraculous since all of that was inspired by the life of one little boy named Sam. I love how the CHD community has pulled together to make music and fund research all with the hope of improving the lives of those affected by congenital heart defects.

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