Walking With Families Podcast |Hope & Inspiration |Weekly Interviews With Families & People Involved With Helping Critically

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.

In this episode, Allyson Drake talks about helping parents and children through the grief process after losing a child or loved one. Alyson shares: What led her to starting her organization Full Circle Grief. What the 4 tasks of grief are that everyone must work through after losing a loved one or a child. Plus, Allyson talks in depth about how each of these 4 tasks of grief can affect people and how to work through each one. When walking through the pain of grief, the goal is to just except the pain and the suffering. She suggests to be with your grief and surrender to it and eventually you will learn how to walk with your grief. Plus, she talks about the difference between losing a child and the difference in losing a parent or significant other. Moreover, Allyson explains the difference between traumatic grief and grief. Plus, she talks about the increased risks to parents after the death of a child. She talks about what complicated grief is and how it can often appear in the 4th task of grief. Allyson talks about the 3 biggest factors that help parents adjust to their child's death over time. She offers that everyone who loses a child experiences a traumatic death. Finally, Allyson offers advice to parents in regards to their marriage after losing a child. Join us as Allyson shares her expertise to help parents and children through the grief process.

On this episode of the podcast, Jenny Samuels shares her story about her son who has Type 1 Diabetes. Jenny talks about her son, his initial stay in the hospital, and how his he was diagnosed with juvenile diabetes. She talks about her daily routine with her son and how diabetes has impacted the family. Plus, she gives a thorough explanation of diabetes and how it affects children. In addition, Jenny talks about the long-term effects of diabetes and how it can damage the body. Moreover, she talks about the best methods to control diabetes. Jenny talks about her hospital stays and how seeing other children in intensive care changed her perspective about her son's diabetes. Plus, she talks about how diabetes affects her son at school. Join us as Jenny shares her story about her son and Type 1 diabetes

Amy shares her journey about what she does as a flight paramedic and how she transports children in critical condition via helicopter. She reveals the type of patients that she transports most often. She discusses some of the environmental challenges that can prevent the helicopter from taking off. She compares and contrasts transporting children versus transporting adults. Plus, Amy talks about what you can do as a parent to assist first responders if your child ever needs emergency care. Moreover, she talks about why pre-planning in case your child does need emergency care is so important and how it can save precious time. In addition, she talks about the differences in care between an ambulance and the helicopter. Finally, Amy and Kelly both offer parents advice about having a child in an emergency situation transported in a helicopter. Join us as Amy shares her insights as a flight paramedic.

On this episode of the podcast Tammy shares her journey with CHD in regards to her son and how it led her to working with the Children's Heart Foundation. During this episode: Tammy shares her story about her 22-year-old son who has congenital heart disease. Tammy talks about when her son was first diagnosed with congenital heart disease and his first hospital stay. She tells how she had to take her son to the emergency room within 36 hours after being home from the hospital. She shares how the second hospital stay turned into another 21 days. She talks about her son’s second and third heart surgeries. Moreover, she talks about how CHD affected her son growing up. Tammy talks about how she became involved with the Congenital Heart Foundation. She describes how the Congenital Heart Foundation raises money to help provide initial funding for specific congenital heart disease research and projects. In addition, she talks about a National Database project funded by the Children's Heart Foundation to help doctors share research across hospitals. Finally, she talks about the growth of the Congenital Heart Foundation and how it hopes to fund $10,000,000 dollars in research in the near future. Join us as Tammy shares her story.

This week on the podcast, Jennifer talks about losing her first child at 27 weeks in the pregnancy and then losing her second child to CHD. She talks about how the loss of her two children motivated her to help other families who have lost their child. Plus, she now educates parents about blood clots in CHD babies and children.  On this podcast:  Jenifer talks about when her second child was first diagnosed with Congenital Heart Disease.  She also talks about the fetal intervention used to help her son.  Jennifer talks about how her body was affected due to complications from the delivery.  In addition, she talks about the complications that led to her son passing away.  Jennifer then talks about navigating the grieving process and how this led her to help other children with CHD. She shares how losing two children affected her marriage Jennifer also talks about how she started the Angel Box Program with Mended Little Hearts for parents who have lost their child.  Finally, Jen talks about specific things that she did to help her heal from losing both of her children. Join us as Jennifer shares her story! 

Amy shares her story about her son who was not diagnosed with CHD until after he was discharged from the hospital.  She talks about his heart surgery and his time in the hospital.  She also talks about caring for her son once he was home.  She talks about the potential future heart procedures that her son may need.  Further, she discusses how finding a good support network is vital.  Amy then reveals how she worked with the Mended Little Hearts National Organization, the American Heart Association, and the Children's Heart Foundation. She discusses how her work with these organizations led her to start her own organization - the Pediatric Congenital Heart Association!   In addition, Amy talks about what helped her the most while her son was in the hospital.  She talks extensively about how she is working with the hospital to provide transparency within their pediatric heart program when dealing with the parents of children with CHD.  Plus, she explains the differences between her organization and the other national heart organizations.   Join us for this podcast episode as Jennifer shares her story! 

Dr. Thomas L'Ecuyer talks about how he helps children who need a heart transplant. He describes the entire heart transplant process from initially evaluating the child, through the child's heart transplant, and then caring for the child after the transplant. Dr. L'Ecuyer talks about what inspired him to become a pediatric cardiologist. He also discusses what is involved in determining if a child needs a heart transplant. He talks about the average wait time for a child who needs a heart transplant. Dr. L’Ecuyer discusses how the family is affected by a child who needs a heart transplant. He addresses why having a heart transplant is normally the last option to surgery and other medical interventions. In addition, he talks about the Berlin Heart and how it helps children who are waiting for their heart transplant. He discusses the parent's biggest fears when their child needs a heart transplant. He talks about how antibodies can affect a child after a heart transplant. Dr. L'Ecuyer talks about some of the symptoms and conditions that parents need to be aware of after a child receives a heart transplant. Finally, he also talks about the future of heart transplants in children. Join us as Dr. L'Ecuyer shares his expertise.

This week on the podcast we chat with Monica Rodgers, an adult who was born with congenital heart disease. Monica talks about first being diagnosed with congenital heart disease as a child, her first heart surgery, and what she remembers about her hospital stay. She talks about growing up with CHD and how it affected her, what her limitations were, along with interacting with her peers. Monica shares how her experience with heart disease led her to become a home health care and NICU nurse. She talks about why she wanted to be a nurse. She also describes in great depth the biggest rewards and challenges about being a home health care nurse. She discusses the differences and similarities of working with families as a NICU nurse and as a home health care nurse. She also talks about how CHD-affected her during her pregnancies and during labor with her 3 children. Monica discusses and offers personal advice to parents in regard to the trauma many parents experience while their child is sick in the NICU or even after the parents are at home with their child. Moreover, Monica talks about being the mom to her daughter who is on the autism spectrum. Finally, Monica shares one very important piece of final advice to parents who have a sick or injured child. Join us this week on the podcast as Monica shares her story!

In this episode on the podcast, Amy Fields talks about adopting two children with special needs. Here are some of the topics Amy discusses: She talks about what inspired her to adopt two children. How her son’s addiction at birth to methamphetamines affects him today. She talks about the types of therapy her son receives and how he manages in school. In addition, she talks about her daughter who was born addicted to heroin. She describes how the heroin caused her daughter to have a stage 3 brain bleed and how that has affected her. How discusses how each child is different, how they are doing today, and how they interact with one another. She also talks about advocating for her two children with unique needs. Plus, Amy touches on the adoption process and how to adopt a child. Finally, Amy describes how methamphetamines and heroin addictions at birth affect children differently.

Key talks about how her daughter was born during her 28th week of pregnancy. She talks about the challenges her daughter faced after she was born. She also talks about the stress of being in the NICU for 6 weeks. Key shares how she spent her time while in the NICU. She talks about how her experience as a nurse at UVA Hospital helped her while her daughter was in the NICU. Plus, she discusses the things that helped her while her daughter was in the NICU. Moreover, she talks about life once she got her daughter home from the NICU. Key reflects on how her older children were affected by their sister being in the hospital for 6 weeks. At the end of the podcast, Key's four-year-old daughter joins us on the podcast. Join us as Key shares her story about the premature birth of her daughter.

In this episode, Melody Johnson shares the story of her daughter’s kidney and liver transplant. Melody shares her daughter’s diagnosis with Polycystic Liver Disease at 6 months old, with a subsequent diagnosis of liver fibrosis at age 1. She talks about how kidney and liver failure led her daughter to have high blood pressure, and how it was necessary for her daughter to begin dialysis at age 13. She discusses how her daughter’s education was affected during her first 13 years of life, and she shares how her medical challenges and hospital stays affected her other children. Plus, Melody shares with parents how important it is to rest, and to take care of yourself, while your child is in the hospital. She talks about the procedure of getting her daughter on the kidney and liver transplant waiting list. She talks about the actual kidney and liver transplant operation. Moreover, Melody discusses in great detail how this has affected the rest of her family. She also discusses how she feels parents could be better served by knowing what resources are available to them and by possible receiving therapy while they are going through these challenges with their child. She suggests how hospitals might help parents as their child that is going through the challenges of long hospital stays and having complex medical treatments. Plus, she offers families advice who may be just starting on their journey with their child needing a liver and kidney transplant. Finally, Melody and Kelly talk about the importance of organ donation and how it saves lives! Listen to this podcast episode as Melody shares her story.

In this episode, Dr. Sara Rasmussen talks about her job as a pediatric surgeon and why she is so driven to make a huge impact on so many children and their family's lives. Dr. Rasmussen shares: What inspired her to become a pediatric surgeon. How she spends her time each day. UVA recently partnered with the University of Pittsburgh Children's Hospital so more children can receive kidney and liver transplants. Dr. Rasmussen talks about how this relationship is mutually beneficial to both hospitals. Dr. Rasmussen talks about what qualifies a child for a liver transplant. She also talks about the feeling in the operating room during the first collaborative liver transplant and how partnering with University of Pittsburgh Children's Hospital is going to provide better care to more patients! Plus, she talks about monitoring patients that have had liver transplants. Moreover, she talks about the cases that she finds most difficult and how no procedure or case is uninteresting to her. Why G-Tubes often provide families with a huge sense of relief and benefit. Plus, she talks about parents supporting each other and taking care of themselves, while their child is in the hospital and after the child has been discharged. Finally, Dr. Rasmussen talks about her mindset and perspective when a child succumbs to their health challenges and how she helps the child's parents. Join us for this episode!

Dr. Dunsmore treats children for any type of disease that has to do with the blood or any type of cancer Dr. Dunsmore shares that between 10,000 and 12,000 children will be diagnosed with cancer each year. This represents an increase in diagnosis rates since tracking first began, but survival rates have increased as well. According to Dr. Dunsmore there are 3 specific reasons why children with cancer normally do better than adults: 1) Children get different types of cancer 2) Children have the ability to heal themselves and withstand the toxicity of the treatments better than adults.. 3) Pediatricians around the globe have made significant strides in sharing their research and data. She talks about some of the different therapies to treat pediatric cancer: 1. Surgery 2. Chemotherapy 3. Radiation 4. Immunotherapy - a new type of therapy which UVA is helping to pioneer. This has become one of the greatest changes in cancer treatment in the last 30-40 years. Dr. Dunsmore also talks about some of the side affects from the various types of cancer treatments. She talks about working with and preparing families after their child has been diagnosed with cancer, and that the goal of UVA's pediatric cancer treatment is to make the cancer an event in the child's life and not the event of the child's life. She talks about helping kids continue their education while receiving treatment. Dr. Dunsmore also talks about the types of stress that many parents experience when their child has cancer. She also discusses how post traumatic stress affects the parents and families of children with cancer. Finally, she talks about the importance of clinical trials, how beneficial they are, and why parents should consider them. Join us and listen to this episode of the podcast as Dr. Dunsmore shares her expertise.

Annie talks about finding out that her unborn daughter was going to have congenital heart disease while her and her family were living in Iceland. She talks about having to return home after learning about her daughter's heart defect. Also, She talks about her emotions after learning about the heart defect. Annie talks about how her daughter had surgery to repair her heart 9 days after she was born and how the surgery lasted for almost 9 hours. Plus, Annie she talks about her emotions in the hospital while her daughter went through her 3 heart surgeries. In addition, she describes how the stress affected their marriage. How her daughter's heart surgeries affected her other two daughters who were ages 4 and 6. Moreover, she talks about how journaling helped her process her thoughts and emotions during this challenging time. She also talks about how her documenting her family's experience with her daughter led to her publishing a book called. "Unexpected Grace When Your Child Is Born With Half A Heart". Finally, she shares insights on how her and her husband dealt with post-traumatic stress. Join us as Annie shares her story!

Rebecca shares her story about her daughter who has Dilated Cardiomyopathy. She talks about how her daughter's heart disease was not discovered until she was four months old. Plus, Rebecca talks about her journey in the hospital and having her daughter placed on the heart transplant list. Rebecca shares her experience of having her daughter on the heart transplant list and everything that entails. She talks about how her daughter is doing today – after working her way off the heart transplant list. Rebecca shares how she explained to her other children that their sister has chd. She talks about how her daughter's twin brother developed differently and then reveals some of her daughter's developmental delays. Plus, Rebecca talks about her job as a physical therapist and how she helps children with developmental delays. She emphasizes why it is important for parents to be the #1 advocates for their child in regards to getting services for any developmental delays. And finally, Rebecca briefly talks about Mended Little Hearts and how she lead the local chapter in Central Virginia.

Dr. Rebecca Scharf is a developmental pediatrician at the University of Virginia Children's Hospital. She talks about the 3 aspects of how she helps children with medical complexities such as critical care, education, and research. Discusses the 4 different clinics that she oversees that help children. How a family friend who was a doctor in the Congo inspired her to become a pediatrician. Talks about UVA's Center For Global Health and how the research benefits children around the globe. Discusses how the first 1,000 days from conception are critical to lifelong development. Plus, Dr. Scharff talks about the developmental challenges faced by children who have been hospitalized for long periods of time. The importance of a g-tube to help children receive adequate consistent nutrition, and how it affects them developmentally. Moreover, Dr. Scharff discusses a developmental study on children's with congenital heart disease and their long-term developmental outcome.

Molly talks about her son and when he was first diagnosed with autism. How their son's diagnoses affected her and her husband. She reveals some of the symptoms that that her son displayed prior to being officially diagnosed with autism. Plus, she talks about the actual appointment and how the doctor diagnosed her son with Autism. How her daughters interact with her son. How she feels each child has unique gifts and abilities. Molly shares the different types of therapist that her son works with each week. Moreover, she describes what her daily routine is like managing 3 children and over 20 hours of therapy for her son each week. Plus, we discuss the importance of early intervention and how important the services are to children who have developmental delays. In addition, she talks about the autism spectrum and how it can affect children. Finally, Molly talks about her new project to help other parents all across globe who have children with special abilities.

Annaleci shares her story about growing up with congenital heart disease known as Truncus Arterious Type 2 and how it has affected her over the years. She discusses her parents and how they have helped her throughout her life. She shares how she beat the odds of surviving her first heart surgery. Annaleci describes her first two heart surgeries in depth and talks about the risks and complications from her first two heart surgeries. She talks about her favorite activities and also the activities she avoids because of her heart. Plus, she talks about making the decision at 11 years old to choose the hospital to have her next heart surgery. She describes her 3rd heart surgery, what she remembers, how she felt afterwards, and how the surgery benefited her. She talks about her hopes, dreams, and aspirations for her future. Annaleci also offers advice to other parents and people with congenital heart disease. Plus, she describes other health problems, some of which are related to the heart disease and some that are not. How her parents have helped and supported her throughout her life and as she transitions to an adult. How her peers supported her growing up. She talks about the resources that have helped her. Listen to this week's podcast as Annaleci shares her story.

Lauren shares her story and her perspective as an adult who has lived with congenital heart disease her entire life. Lauren talks about: How after she was born she was first diagnosed with congenital heart disease. Lauren talks about her first surgery. How growing up with congenital heart disease affected her in school, activities and sports, and siblings. How Mended Little Hearts impacted her. Lauren shares her thoughts and memories on preparing for her heart surgeries. Lauren talks about her experience after her heart surgery and what she remembers the most. Plus she shares information about her heart health today and what some of her limitations are. Lauren also talks about how her parents prepared her to care for herself as she grew older and became an adult. How the technology and the heart procedures have changed in her lifetime.

Danielle shares her story about her son who has spastic cerebral palsy. Danielle talks about being diagnosed with an autoimmune disease called Graves’Disease. She shares how Graves’ Disease led to a thyroid storm and how the thyroid storm affected her. When Danielle was 32 weeks pregnant the ultrasound showed that something was different, but doctors weren't sure what. When Danielle’s baby was born doctors used what is called the EXIT procedure which had been performed only 3 times in the United States at that point. Danielle discusses how her autoimmune disease prevented her son's lungs from forming. Once she was home, Danielle talks about some of the symptoms she started noticing prior to her son being diagnosed with Cerebral Palsy. Danielle also reveals how she went about getting additional services to help her son, such as occupational therapy, physical therapy, speech therapy and ABA therapy. Plus, she talks about how horse therapy has helped her son immensely. Danielle talks about how her son is doing today. She discusses how she has tried various therapies, such as Botox therapy, to help her son's muscles relax. She talks about how children with cerebral palsy often need surgery because the bones are growing faster than the ligaments and muscles can grow. Plus, she talks extensively about how she takes care of herself so she can better care for her children She shares how her son's medical challenges affect her other two children. Finally, Danielle talks about why she wanted to give back to the Ronald McDonald House and what she did to achieve her goal. Join us for Danielle's episode.

Dr. Norwood, a developmental pediatrician, focuses on helping children who either have serious ongoing medical challenges or at some point in the child's life has faced a serious medical challenge. Some of the topics that Dr. Norwood discusses are: Why he became a developmental pediatrician What the difference is between a pediatrician and a developmental pediatrician. Why the brain's development in the first two years of life is critical to overall development throughout a child's life. (deleted a redundant phrase). Why, during the first two years of life, the most important activities that you can do to help your child developmentally are reading and talking to your child. How toxic stress can have an adverse effect on a child’s development. The importance of physical therapy, occupational therapy, and speech therapy to assist the child and the parents in the child's development. The difference between an IFSP and an IEP? Dr. Norwood talks about the importance of both parents being involved in the care and the development of the child. Moreover, he talks about his responsibilities being the chair for the Council on Children with Disabilities, which is a group within the American Academy of Pediatrics. He shares how they advocate for children with disabilities and their families. Plus, he discusses family-centered care and how you cannot optimally care for a child if you do not understand the needs and resources of the family. The care team needs to understand the context in which that child exists, the family context, and the community context to most effectively provide for that child's needs. Plus, Dr. Norwood talks extensively about the importance of dental hygiene in children with neurodevelopmental disabilities and delays. He discusses why newborn hearing screens are important to the development of a child who has medical complexities. He offers advice on preparing for a child for an appointment with a developmental pediatrician. He provides clues to use in evaluating your child for developmental disabilities once they are in school. Plus, he reveals what Vulnerable Child Syndrome is and why parents need to be aware of it. Finally, he gives specific strategies and techniques on how to evaluate when your child accomplishes his or her development milestones Join us for this exciting episode.

In this episode Brooke shares her story about her son Miles who has Tetralogy of Fallot. Brooke talks about: How she first discovered Miles was going to have a congenital heart defect. The challenges of diagnosing the heart condition and then delivering Miles. Plus, Brooke talks about the events leading up to Miles' first heart surgery. Brooke also talks about some of the symptoms Miles experienced leading up to that first heart surgery such as falling asleep while eating and not gaining wait. In addition, Brooke talks about her stay in the hospital and Miles being put on a temporary pace-maker after his heart surgery. The day after Miles was discharged from the hospital, he had more complication from his heart surgery. Plus, Brooke shares how her older daughter was affected while her son was staying in the hospital and upon the family's return home. Plus, she shares advice on what would have helped her while she went through the entire experience along with advice to other parents. Moreover, she shares why she wishes she could have met another family with a heart baby prior her son's heart surgery.

In this episode on the podcast, Meghan Wagoner, who is a NICU nurse talks about caring for newborn babies in critical condition that are in the neonatal intensive care unit. She talks about: -Why she became a nurse. -The training involved in care for babies in the NICU. -The difference between the care of a Level 1 to a Level 4 NICU. -How her caring for a wide range of babies with various medical challenges motivates her to be her very best! -How she helps parents with their stress while their baby is in the NICU. -She talks about continuity of care for babies and how to handle the delicate situation if the parent and the nurse are not getting along. -She also shares advice on what to focus on why your child is in the NICU. -The joy she has when she gets to see the babies grow and thrive once they are discharged from the NICU. -Caring for babies with congenital heart defects in the NICU. -How caring for premature babies is different than caring for babies with congenital heart disease. -Finally, Meghan offers parents advice on things that they can do to help their baby while in the NICU.

In this episode Catherine talks about her daughter's journey with congenital heart disease. She talks about when she first found out about her daughter's heart condition. How she chose a pediatric cardiologist to care for her daughter's heart. The challenges of her daughter being born pre-mature with congenital heart disease. The stress of the going through the first heart surgery. How she stayed in the hospitalize for the first 6 months of her daughter's life. The anxiety and anticipation of the second heart surgery. The challenges that her daughter faced after the second heart surgery. How her daughter needed a G-Tube to help her get the required number of calories each day. How her daughter developed complications and had a major setback, and had to fight for her life. The challenges of parenting two children and being pregnant while her daughter was recovering from her heart transplant. How she prepared for her daughters heart transplant. How her daughter is doing today and what a typical day is like now. Plus, Kelly and Catherine talk about resources that helped Catherine through her daughter's medical challenges. Finally, Catherine talks about the family that donated the heart to her daughter.

In this episode, Dr. Vergales, who is a pediatric cardiologists, talks about many different aspects of caring for children with single ventricles. In addition, he goes into great depth about caring for children with single ventricles in between the first the first two heart surgeries that most single ventricle children experience. In this interview, he discusses: -What lead him to becoming a pediatric cardiologist -Vital warning signs in between the first and second heart surgery that parents need to be aware. -The biggest rewards and challenges in caring for children with chd. -Also he explains why obgyn's have a more challenging time caring for babies in utero with congenital heart disease. -In addition, he talks about how congenital hearts defect occurs while the baby is forming in the womb. -Moreover, he reveals new technology that is going to help parents and doctors care for children who have congenital heart disease. -The future of congenital heart disease in the next ten years. -How the first few years of life are often the most important for long-term development. -Why it is important to try to work with the heart the baby was born with versus a heart transplant. -When should a parent call their local pediatrician versus the pediatric cardiologist, when they have concerns for their child. -How hospital are collaborating across the country on pediatric congenital heart disease studies. -Finding balance in caring for your child in between the first two heart surgeries. -Plus, much more. Join us for this episode.

September is Childhood Cancer Awareness Month, so in this week's podcast Lee shares his story about his son, who at 3 years old, was diagnosed with one of the rarest types of cancer. Lee talks about: -His son being diagnosed with one of the rarest forms of cancer. -The challenges of being in the hospital for 6 weeks. -How his son is doing today. -How his other son is his handling his brother's illness. -The side effects of the drugs used to cure the cancer. -How the drugs affected his son. -Why Lee and his wife are so passionate about helping other families. -How this effected school for Caleb. -How finding other families going through similar situations impacted his son and family. -How Lee and his wife both processed their son being diagnosed with cancer differently. -What 4% is not enough really means. Join us for next week's episode.

In part 2 of Laura Carpenter's interview she talks about: -How children process stress through play -Children and their resilience -CHD the lack of awareness of local pediatricians and pediatric emergency rooms. -Ways to be prepared if your child has to go to the ER. -What is CHD awareness and how do inform people about it so more people are aware of it? -Mended Little Hearts Angel Boxes & Bravery Bags -Living life in each moment. -Why it is so important to continue to try to create more awareness for CHD and how that effects the amount of money raised for research, which is critical to helping children with CHD. Laura shares her thoughts on even though her daughter only lived two months she realizes that she received an unbelievable gift in her daughter. -How you can get involved with the Angel Box program Join us for this episode!

In part 1 of Laura Carpenter's interview, she talks about her experience with her child, who had one of the rarest forms of congenital heart disease called truncus arteriosus, plus why she is so determined to help other families who have children with congenital heart disease. Here are some of the topics Laura talks about: *Laura shares about when her child was first diagnosed with CHD. *How she and her husband's life changed once their daughter was diagnosed with CHD. *How they had to move to Philadelphia for her daughter to be born. *What it is like to deliver your baby at Children's Hospital of Philadelphia (CHOP) *The stress and anticipation of handing your child to a surgeon for a heart operation. *The daily routine her family had while at the hospital. *Being discharged and taking her child home. *What her normal family routine was like once she was home. *Attending the first follow-up cardiology visit *How differently she and her husband were processing the grief of having a child with a medical condition. *Then Laura describes the one day that changed her life forever. *Finally, in this episode Laura talks about preparing siblings for their brother or sister's surgery. Join us for Part 1 of Laura's interview.

In this episode Dr. Swanson, a neonatal intensive care doctor (NICU) at University of Virginia Children's Hospital talks about: -What inspired him to become a neonatologist. -Shares specific types of training NICU doctors need to care for a wide variety of children born with complex medical conditions. -Why the child and parents benefit, if the parents can be at the bedside with the child, while in the NICU. -Shares specific information on children born premature, with congenital heart disease, or other medical challenges. -He also talks about the future of medicine and how it has the potential to help save even more children that will be born in a NICU. -The newest technology that UVA is implementing to help the parents and children stay connected. -He shares one test that UVA developed that saves 1 out of 50 babies lives who are born in the NICU. -Offers advice on managing stress to parents who have a child in the NICU. -He also discusses the unfortunate situations of when children in the NICU don't survive and how the doctors, nurses and hospital staff grieve and help the parents. -Finally, he shares one of his greatest joys of being a NICU doctor. Join us for this episode!

In this episode Shannan Pearsall shares her story about her son who has congenital heart disease. One thing to pay attention to is Shannan's gratitude throughout this interview. During this interview Shannan talks about: * When she first found out about her child's heart condition in utero. * How she and her husband formed a "game plan" once they found out about their son having congenital heart disease. * Going through her son’s 3 heart surgeries and the family's daily life in between the surgeries. * Having a second child in between the 2nd and 3rd heart surgery. * The emotion and impact that visiting Disney World had on her and the family prior to the 3rd heart surgery. * How she and her husband anticipated and responded differently to the 3 different surgeries. * The challenges of caring for two children while her son went through the 3rd heart surgery, the Fontan procedure. * Plus, she shares how her son is doing today. * She talks about a national organization that she is involved with that helps families with children who have congenital heart disease. * Moreover, she shares how she tries to help families with children with congenital heart disease every single day. * Finally, Shannan offers advice to parents who have children with congenital heart disease that may be struggling with post-traumatic stress syndrome. Join us for this exciting episode.

In this episode, Bre talks about home health care nurses and how they care for the child and support the family. Here are some of the topics she discusses: * The biggest rewards and challenges of being a home health care nurse. * Limitations and restrictions of her job while helping families. * The differences between hospital nurses and home health care nurses. * The parent's role in working with a home health care nurse. * The home health care nurse's involvement with siblings. * Questions to ask the home health care nurse during the initial interview. * Plus, Chuck and Kelly share their experiences working with home health care nurses. Join us for this exciting episode!