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Heart Mom and Registered Nurse, Lori Irvin, joins Anna in this July 2020 episode to talk about COVID-19 and a complication that happens in some children called "MIS-C." Lori joins Anna to talk about the challenges and concerns surrounding coronavirus for families with a child who has a congenital heart defect (or CHD) and offers her perspectives and guidance for staying safe, as well as providing information on what we know about symptoms and treatment for Multisystem Inflammatory Syndrome in Children (MIS-C), a rare but devastating complication of COVID-19.

Article Mentioned in the Podcast
Post-Intensive Care Syndrome by the Cleveland Clinic

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Heterotaxy Syndrome is a rare congenital disorder which usually includes a complex congenital heart defect. In this episode of "Heart to Heart with Anna," Faith Earnest, a heterotaxy syndrome survivor, shares with Anna what she has uncovered with her research, what her life has been like growing up with this rare congenital syndrome, and what she believes others with heterotaxy syndrome need to know.

Other Heart to Heart with Anna Episodes involving heterotaxy syndrome:

Ivemark Syndrome: Yesterday and Today

Raising Awareness of Ivemark Syndrome

Homeschooling a Special Needs Heart Warrior

A Connection Between Flu, Arthritis & Heart Disease: A Mother's Instincts

Facebook Heterotaxy Support Groups:

Heterotaxy Connection Support

The Heterotaxy Network


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Born in 1960, Kimberly Russell was diagnosed as a "blue baby" and wasn't expected to survive infancy. Kimberly Russell's care for her complex heart was always just a step behind what was necessary to keep her alive. In 2020, Kimberly is preparing to celebrate her 60th birthday with a complex congenital heart defect and she wants to give back to the community which has honored her life. As an author, speaker, and ambassador for the CHD community, Kimberly is holding contests, raising awareness, and showing by example how to enjoy every day of one's life. To take part in Kim's contests in July 2020, visit her Facebook page here: https://www.facebook.com/Kimsheartbeat/

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Daphne Davis-Patrick is a mother, a grandmother, a nurse, and an author. She joins Anna in this episode of "Heart to Heart with Anna" to share her cardiac journeys as multiple members of her family have had to deal with living with congenital heart defects. Along this journey, Daphne's family discovered a hereditary defect that has affected two of her granddaughters and her son-in-law. The loss of her son, Joval, and the discovery of her family's other congenital heart defects led Daphne to write a book to help other families have hope and never give up.

To purchase Daphne's book, go to this website

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Biörn Ivemark is credited with the discovery of Ivemark Syndrome in 1955. According to the National Organisation for Rare Disorders, Ivemark Syndrome is comprised of: 1) an absent or underdeveloped spleen, 2) cardiovascular anomalies and 3) abnormal placement of the organs in the chest
and or abdomen. Julia Mayfield is an adult born with this rare genetic condition called Ivemark Syndrome.

Julia is joined on this episode of "Heart to Heart with Anna" by Biörn Ivemark's grandson, Richard Ivemark. Growing up, Richard’s family sometimes spoke of Ivemark Syndrome, but
nobody fully understood what it was. After the passing of his grandfather in 2005, Richard was unable to get a complete picture of the disorder. So, in 2019 at the age of 18, he decided to write a paper on Ivemark Syndrome to understand his grandfather’s legacy. In doing so, he found the small, yet welcoming, Ivemark Syndrome community online trying to raise awareness about this rare disorder.

Julia and Richard share what they've learned about Ivemark Syndrome with Anna, as well as, their hopes for the future of the label "Ivemark Syndrome." Julia also gives some advice for others looking to get information about rare diseases.

Links to Programs and Organizations Mentioned in this Podcast:

Julie's other "Heart to Heart with Anna" episode

Julie and Richard's Ivemark Syndrome Support Group

NORD - National Organization for Rare Disorders

RaDaR - Rare Disease Registry Program

GARD - Genetic and Rare Disease Information Center

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Brandon Lane Phillips and Jeremy Miller are unlikely friends. Brandon was born with tetralogy of Fallot and lived with his family in Louisiana. Jeremy was a child actor, perhaps best known for his portrayal of Ben Seaver on the hit 1980s sitcom "Growing Pains." The two men met when Brandon, at age 11, had a wish granted to him and he had a chance to meet Jeremy on the set of "Growing Pains" and theirs has been a friendship to transcend the years.

On this episode of "Heart to Heart with Anna," these long-time friends talk to Anna about how they were brought together, what transpired in their lives for them to be brought together time and again, and how they came to write a book together -- "When I Wished Upon a Star: From Broken Homes to Mended Hearts" and what it meant to them to win the Baby Hearts Press People's Choice Award.

Here are Brandon Lane Phillips other "Heart to Heart with Anna" appearances:

Heart Warrior Doctor-Nurse Team: Treating Pediatric Cardiology Patients 

Interwoven Lives and Congenital Heart Defects
 
To order the book "When I Wished Upon a Star: From Broken Homes to Mended Hearts," Use this link: https://wheniwisheduponastar.com/

The nonprofit organization responsible for granting Brandon's wish: https://www.starlight.org/

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Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

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Annie Ulchak is a unique Heart Warrior. Born in Lima, Peru in  1979 with nomenclature HLHS, she came to the United States for life-saving surgery, after she was adopted. She joins Anna on this episode of "Heart to Heart with Anna" to talk to her about what her medical journey has been like, what complications she has encountered as an adult, and how she has taken control of her medical life.

In the 3rd segment, Annie mentions creating a medical history that Heart Warriors can keep with them. Here is a link to the Adult Congenital Heart Association page which helps adults build a convenient History Passport:  https://www.achaheart.org/media/1215/php2018web.pdf

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Sandra Wallis is the author of "Not What I Bargained For: My Journey Raising Four Incredible Kids, Including Two With Severe Medical Conditions." She joins Anna in this episode of "Heart to Heart with Anna" to talk about what it was like for her to raise two children with special needs and how she because an author. With one child born with spina bifida and another born with gastrointestinal pseudo-obstruction, Sandra certainly had her hands full! Tune in to hear how Sandra faced seemingly insurmountable medical complications, almost losing her precious son, and how she and her husband managed to raise all 4 children to adulthood. 

To listen to the episode of "Heart to Heart with Anna" featuring Sandra's son Darryl, use this link: https://tinyurl.com/ych3a6hv

Find Sandra on Social Media:

https://www.facebook.com/sandra.wallis1
https://www.facebook.com/Sandra-Wallis-Author
Instagram:    sandrawallis1

To purchase Sandra's book, contact her on Facebook or Instagram or purchase at Amazon here; https://tinyurl.com/yadk5kxs
or Baby Hearts Press here: www.babyheartspress.com

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Sandra Harper Lamgo has a very special story. She talks with Anna about what it was like for her to grow her family and how one loss, in particular, changed her husband's and her life forever. Undiagnosed hypoplastic left heart syndrome resulted in a tragedy that Sandra never could have predicted. Tune in to hear what happened to Sandra and her family, how the loss of her son, William, has affected her life, and the unexpected outcome of losing a child.

To be put on the waiting list for Sandra's book, Twenty-Seven Hours of Will, visit her Facebook page: https://www.facebook.com/SandraHarperLamgo/

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Bonnie Hunt is a mother of three children, including a medically complex child, who has spent a lot of time in hospitals and doctors’ offices. Greg has
Goldenhar Syndrome, as well as LPA ring-sling complex. She is from the
Canadian Prairies and is familiar with many hospitals in the country.
She is a devoted mother and advocate for families dealing with
Goldenhar Syndrome. 

Bonnie joins Anna to talk about what Goldenhar Syndrome is and how this rare birth defect has affected her family. She also talks about what it means to have a child with special medical needs in rural Canada and the special challenges her family faces dealing with hospitals that are many miles from her home. 

Recorded during the height of the COVID-19, Bonnie and Anna discuss what it means for a medically-fragile child to deal with germs, how the coronavirus is affecting the congenital heart defect community, and what language is now part of the world's experience and how that vocabulary might help Bonnie in the future.

To learn more about Bonnie, check out her blog: https://dwellinglogs.com

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