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.
Jolene talks about her journey with her son and how she discovered how his surgeries and hospital stays early in life affected his long-term development, causing trauma and PTSD. She shares the trauma her son experienced after birth, involving flights to two different hospitals in two different states for surgery. She talks about her son's experiences with 7 surgeries and 100's of hospital procedures by the time he was 5 years old. Jolene then talks about when she first started noticing symptoms of trauma and PTSD in her son. She describes more of his significant behaviors that really concerned her as he grew older. She describes the difference between trauma and PTSD. Plus, she talks about specific things that parents can do to help prevent PTSD from developing in a child. She discusses three risk factors that can contribute to PTSD in a child. Jolene talks about the ACEs test, measuring the impact of Adverse Childhood Experiences, and how this might reveal potential long-term future health risks from trauma and PTSD early on in life. She shares what the fight, flight, and fright responses are. Finally, Jolene shares resources that can help parents with their children in regards to trauma and PTSD. Join us as Jolene shares her story.
On this podcast episode, Kayla shares her story about her daughter: born at 25 weeks in her pregnancy, her long 6 months stay in the hospital, being away from her family, and how her daughter has overcome all the odds and is now thriving and at the head of her class. On the podcast, Kayla shares the details of her inspirational story, such as: Kayla shares the story of her pregnancy and going into labor at 25 weeks of gestation. She describes her 6-month hospital journey with her daughter. She shares what her life was like after her daughter was discharged and home. She talks about being a mom and the medical care provider for her daughter was challenging. Kayla also talks about why it is so important for parents to care for themselves during these challenging times with their children. In addition, she talks about how she and her husband processed each of their experiences differently. She shares how these challenges impacted her marriage. Moreover, she reveals why it is so important to champion your child and celebrate each accomplishment and milestone. Plus, she shares how blogging on her website became therapeutic in her healing and how her blog now helps other people going through similar challenges. Finally, she talks about her book and her motivation to write it and how it is helping other people. Join us as Kayla shares her story about the journey with her daughter.
46: Melody Nutall- Anencephaly and Making The Most Out of Life To Help Other Children and Families. On this podcast, episode Melody shares her story about her daughter Lailah Joy Heaven who was born with Anencephaly. She talks about when she first learned about her daughter's condition during the pregnancy. She describes in great detail the birth of her daughter and the planning process of donating her daughter's organs. In addition, she talks about how she parented her other young daughter during the pregnancy and birth. She talks about how she and her husband have grieved differently and how it has impacted their marriage. She shares how the death of her daughter has affected other areas of her life. Finally, Melody reveals her motivation and drive to help others going through similar circumstances. Join us as Melody shares her story.
On this week's podcast, Meagan Nash talks about her son, who has down syndrome and how both of them are changing people's perception in regards to children with special needs. Meagan talks about her pregnancy and when her son was first diagnosed with down syndrome. She talks about her delivery and her hospital stay. Plus, she talks about some of the characteristics that children with down syndrome have. She offers encouragement to other families by sharing the resources that helped her the most. Moreover, she talks about her son's favorite toys, food, and activities. Meagan also talks about how her son was able to change national companies perspectives about children with special needs. She also goes into great detail about how her son models for companies throughout the United States. Moreover, she offers advice to parents on how to approach modeling agencies, if they would like their child to model. Most importantly, she describes how her son is doing today and also shares some of his challenges. Finally, Meagan talks about how she advocates and tries to help other families and children who have down syndrome.
On this podcast, Kathy talks about her son who has Cri du Chat Syndrome. Kathy talks about her pregnancy and how there were symptoms and risks during her pregnancy. She describes her son’s birth and his noticeable "cat-like cry". She talks about the challenges of her child's hospital stay. Kathy discusses the challenges of parenting her 3-year-old son, while her newborn was in the hospital. She shares how her 3-year-old son was impacted by his mother and brother being in the hospital. She describes the terror of her son coding when he was one month old. Kathy discusses the statistics surrounding Cri du Chat Syndrome. In addition, she talks about the surgeries her son has had. Kathy discusses how her two sons interact with each other. She also shares how her marriage has been affected. And she talks extensively about experiencing grief because of her son's condition and how she was forced to re-evaluate the expectations she had for her life. Join us as Kathy shares her story!
On this podcast, Celeste shares her story of how her daughter was diagnosed with Congenital Heart Disease (“CHD”) at the age of 3. She talks about the events that led up to her daughter being diagnosed with CHD. Celeste then describes how within a week of being diagnosed her daughter had heart surgery. She talks about her daughter's heart surgery and the hospital stay. Plus, she describes what it was like when she first took her daughter home from the hospital after the surgery. Celeste shares how her daughter is doing today. She talks about how she is giving back to other CHD families by baking birthday cakes for the children. Finally, Celeste offers advice to parents who already have children that have been diagnosed with CHD and also for parents who just learned their child has CHD. Join us as Celeste shares her story.
On this podcast, Ellen Stumbo shares the story of her two daughters - one child who has Down Syndrome, and an adopted child who has cerebral palsy. Ellen talks about her daughter and how cerebral palsy has affected her. She discusses her daughter’s biggest challenge with cerebral palsy - the emotional and relational aspect of interacting with her peers. Ellen shares how her daughter still remembers her time at the orphanage in the Ukraine. Further, she discusses her family's decision to adopt a child with special needs versus having their own natural biological child. Ellen talks about how she structures her goals and priorities. She talks about her daughter with Down Syndrome, and how her daughter has influenced her perspective. She talks about how interacting with other moms who have special needs children has really helped her. She discusses why parents who have children with special needs or complex medical challenges are at a higher risk for their own mental health challenges such as anxiety and depression.
Kristie shares her journey and how she has overcome so many challenges living with a rare form of congenital heart disease known as Shone's Complex. Kristie shares: How she only had a 5% chance of surviving after her first heart surgery at several days old. Plus, she talks about going through her second heart surgery at 2 and half years old. She shares what she remembers about her childhood and how CHD-affected her growing up. In addition, Kristie talks about her symptoms leading up to her 3rd heart surgery at the age of 12 years old. Kristie talks about how her job as a Therapeutic Day Treatment Counselor allows her to help children with special needs. She offers how often behaviors are an outward form of an inward emotion. Moreover, she discusses the importance of talk therapy for kids with CHD to help them during their adolescence years. Kristie also talks about her 4th heart surgery, what caused her to then go into heart failure, and her subsequent heart transplant. She reveals the challenges of a heart transplant, prior to surgery, during and after surgery, the recovery, and how her life is today. Finally, she talks about how she is now setting life goals that she wants to accomplish. Join us as Kristie shares her story!
On this podcast, Dana shares her story about growing up with Tetralogy of Fallot and how all 3 of her children have congenital heart disease. She talks about growing up with CHD, her surgeries, and her experiences at the hospitals. Plus, she describes the conditions of each of her children's heart disease. She shares how having CHD has helped her understand each of her children's experiences with CHD. Dana also talks about her struggle with the guilt of knowing that it was her DNA passed to her children that resulted in each of them having heart disease. She also talks about how she was one of the first patients to receive the Melody valve. Finally, Dana shares how her experiences at Boston Children's changed her perspective. Join us as Dana shares her journey.