Weekly interviews to give families with critically ill and injured children, hope and inspiration by sharing stories from other families and their challenges, insights from doctors, and nurses, plus the views of other support staff that helps the children and their families during their journey.
59: Amy Bennet- HLHS, Heart Failure, and Supporting Other CHD Families
Amy shares her son’s journey with congenital heart disease.
She talks about when her son was first diagnosed during a fetal ultrasound, and the conflicting advice she received from the physicians.
She shares the story of her son’s birth.
She talks about her son's 6-week hospital stay after his first heart surgery.
Amy then talks about how she had to rush her son back to the hospital on 2 separate occasions, where he coded and became extremely ill.
She discusses the things that helped her son recover.
She talks about his second heart surgery and his stay in the hospital.
Amy shares what helped her the most.
Moreover, she tells about her son currently being in heart failure and the symptoms that he is experiencing.
Amy reveals her inspiration behind the organization that she started called Sisters-by-Heart and how it helps CHD families.
Join us as Amy shares her story.
Margaret Keller - Superhero Mom Who Provides Capes To Children With CHD.
Margaret started her congenital heart disease journey when her daughter was first diagnosed with CHD.
Since then she co-founded an organization that delivers superhero capes to children around the world who have CHD.
Plus, she organizes Superhero Heart Runs in cities throughout the United States.
Here are just a few things that Margaret talks about on the podcast.
Margaret talks about when her daughter was first diagnosed with CHD.
She talks about how her daughter had to stay in the hospital for eight weeks after she was born.
She also shares what helped her the most while her daughter was in the hospital.
Moreover, she talks about preparing her daughter for the 2nd heart surgery when she was four years old.
Margaret shares how her daughter's CHD has brought their family closer together.
Plus, she talks about the non-profit organization, Heart Heros, that she co-founded that sends capes to children around the globe and organizes the Superhero Heart Runs.
Join us as Margaret shares her story.
57: Brandi Stafford - Mom of Two Children with CHD, one of whom also has Asperger’s Syndrome.
Brandi shares the story of her two children.
She talks about when her daughter was first diagnosed with congenital heart disease and her stay in the hospital with her for 6 months after she was born.
She talks about their time in the hospital, along with the challenges she faced when her daughter came home.
Brandi also talks about her daughter’s challenges with Asperger’s Syndrome.
She shares how writing has become one of the most helpful and healing activities for her daughter.
She also shares her son’s story with congenital heart disease, his two heart surgeries, and his journey.
She talks about the importance of support from family and friends while her children were in the hospital.
Brandi offers advice to other parents going through similar challenges, suggesting they focus on the success stories of other parents and their children and not the sad, unfortunate stories.
56: Jodie Lemacks - CHD Mom and Advocate Who Connects and Supports CHD Families Throughout The United States.
Jodi shares her story about her teenage son who was born with congenital heart disease.
Jodi shares her experience about when her son was first diagnosed with CHD.
She talks about the delivery and the first two heart surgeries.
Jodi talks about the overwhelming stress that she experienced leading up to her son's Fontan heart surgery.
Moreover, she talks about how her husband handled the stress of their son's Fontan surgery and how important it is for fathers to have their own support group.
Plus, Jodi talks about life after her son's Fontan surgery and how she realized that congenital heart disease for single ventricular children and their parents is a life long journey.
She also talks about the long-term quality of life for children after the Fontan surgery.
Moreover, Jodi discusses the importance of research for congenital heart disease and identifies specific trials that are being done by different organizations.
Finally, Jodi shares a valuable life lesson about CHD and how it affects parents.
Join us for this episode.
55: Kristine Slovis - CHD Mom & Organizer of the Super Hero Heart Run In Virginia
On this episode of the podcast, Kristine talks about her journey with her son who has CHD and how this has inspired her to become an organizer of the Super Hero Heart Run in Virginia.
Kristine talks about her pregnancy and when the doctors first told her that her son's heart was not forming correctly.
She shares the challenges she faced when her son was born.
She talks about the challenges in between her son's first two heart surgeries.
Kristine discusses one of the biggest challenges she faced – the time required to feed her son.
She also talks about how she and her husband worked as a team to care for their son.
She talks about her son’s second heart surgery and how he recovered from it.
She also describes the other physical challenges she noticed she got her son home from the hospital.
Moreover, Kristine talks about her son's 3rd heart surgery, the hospital stay, and the recovery; she also talks about the benefits and risks associated with closing the fenestration after this 3rd heart surgery.
Finally, Kristin talks about her experience in organizing the Super Hero Heart Run in Virginia.
54: Kelli Kelley - Holding The Hands Of NICU Families
On this podcast, Kelli talks about how after both of her children were born that they both spent time in the NICU.
Kelli shares how when her son was born he was hospitalized in the NICU for about 4 months.
She talks about her and her son's experiences in the NICU.
She talks about the challenges she overcame being a first-time mom with a child in the NICU.
Moreover, Kelli talks about how the NICU experience with her daughter was very different than her son.
She discusses trauma and how her experiences in the NICU affected once she returned home.
Kelli talks about the importance of Psycho-Social Support for parents during and after the child has been in the NICU.
Plus, Kelli talks about specific tasks that parents can do to help themselves heal from the trauma of having their child in the NICU.
She shares about the organization Hand to Hold that she started to help families in the NICU.
She reveals the different ways that Hand to Hold supports families from advocates working with families in the hospital, to an online forum, a podcast and matching families with other NICU graduate families in similar circumstances.
Furthermore, Kelli talks about what helped her the most while her son was in the NICU.
Join us as Kelli shares her story.