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 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.

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.

 

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.

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.

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.

Amanda and Patrick talk about their son who has been through two heart surgeries and a heart transplant.

They talk about their son being born and how they were unaware that he had congenital heart disease.

They talk about the first 24 hours in the hospital and then how their son coded while being transported to UVA.

In addition, they talk about the first heart surgery and how their son recovered.

Moreover, they share how they managed the other kids while in the hospital.

They also talk about receiving help from other parents and how the hospital helped them get additional services to care for their son.

Amanda and Patrick both share that after a heart catheterization their son developed a staff infection.

They talk about the challenges and complications that the staff infection caused.

They also share how the staff infection caused their son to have several strokes. Plus, they talk about their son having the Glenn heart surgery.

Moreover, they share how their son experienced heart failure and had to have a heart transplant.

They also talk about going to marriage counseling to process what they both had been through together.

Finally, both Patrick and Amanda talk about what it is like parenting a child post heart transplant.

Join us for this episode as Amanda and Patrick share their story.

Kelley talks about her son, Mason, who was first diagnosed with cancer at age 5 and how his passing at age 11 inspires her to help other families and children in the hospital.

She talks about her son's experience with cancer along with what inspired her to start Mason's Toybox. She shares how her non-profit organization delivers toys to children in the hospital, along with their siblings, and gift cards for the parents during November and December of each year. She talks about where she found her strength during the final two years of her son's life in the hospital. Kelley shares how she processed the grief once her son passed away and how the grief has changed over the last 6 years. She talks about how her son's diagnosis and death has made her a stronger and better person, along with how it has transformed her. She discusses the difference between research and awareness when considering charitable donations.

Finally, Kelley shares how families who have children in the hospital can use Google to search for local resources in the area that may be able to provide additional help. Join us as Kelley shares her inspirational story.

On this podcast, Alyssa shares her story of having 2 biological children and then adopting 6 other children. 

 

Alyssa shares the frightening story of when her first biological son coded after he was born and then experienced seizures. She also shares the story of her daughter’s birth at 27 weeks and their long stay in the NICU.

 

She then talks about how she and her husband adopted their other 6 children.

 

She shares the details of a typical day in the life of the Riedl family.

 

Alyssa describes each child's greatest strength and biggest challenge.

 

In addition,  she talks about her own challenges as a mom to 8 children.

 

Alyssa talks about how she found support from other families who have children with special needs, and how that support benefits her.

 

She also talks about how she maintains her own health so she doesn't get sick with so many kids depending on her.

 

Plus, she shares about her relationship with her husband in regards to their marriage with so many children. 

 

Alyssa talks about the first time one of her children had a GI bleed and why that was one of the scariest moments of her life.

 

Finally, Alyssa shares with families a final tip on parenting and raising children with special needs. 

 

Join us as Alyssa shares her inspiring story. 

On this episode of the podcast,

Kelly shares her story and why she is so passionate about helping other families, fundraising, and doing anything she can to spread awareness about congenital heart disease! Kelly discusses the infertility issues she and her husband experienced prior to having their first son. She talks about becoming pregnant with Finn - just 5 months after her first son was born. She then shares the story of her pregnancy with Finn and his delivery. She talks about spending 8 months in the hospital with Finn, being apart from her husband and their one-year-old son, and all of the challenges that long-term hospital stays present. Kelly talks about the day Finn coded for the first time and how that will be a day she always remembers. She talks about how she found her voice to advocate for her son while he was in the hospital. She talks about the moment in the hospital that inspired her to advocate and fundraise for so many other families and organizations while spreading awareness about Congenital Heart Disease.

Finally, Kelly talks about Finn's next surgery, the relationship between her two sons, and the biggest lesson Finn has taught her. Join us for this episode as Kelly shares her story.

Tara shares her story about her daughter who has hypoplastic left heart syndrome.

She talks about her pregnancy, when her she first learned that her daughter was going to have congenital heart disease, and the moments leading up to her daughter's birth.

She discusses her stress level during her daughter's first heart surgery, and about her daughter's hospital stay after the surgery.

Tara also talks about the time at home in between the two heart surgeries.

Tara also shares how she was able to receive additional medical services and support once her daughter was discharged from the hospital.

She talks about the Glenn surgery and her daughter's recovery and hospital stay related to it.

Tara talks about how their daughter has brought her and her husband closer together and strengthened their marriage.

Finally, she offers advice and resources to parents who may be going through a similar situation.

Join us as Tara shares her story.