Explore "congenital" with insightful episodes like "Where and how to train congenital cardiac surgeons", "Shelly Houser – I Have a Congenital Anomaly", "Patient Advocates, Patient Leaders", "Episode 2- Jenny and Faith" and "Episode 28 | Lauren's Story - A daughter with Congenital Heart Defects" from podcasts like ""A Cut Above: Cardiothoracic insights from EACTS", "Overcomers Overcoming", "Glass Half Full with Leslie Krongold, Ed.D.", "Raising Cain" and "Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist"" and more!
Join our hosts Can Gollmann-Tepeköylü and Miia L Lehtinen, as they discuss where and how to train congenital cardiac surgeons with Prof. Mark Hazekamp, Prof. Jürgen Hörer and Dr Nabil Hussein. The speakers share their invaluable insights and experiences gained during their careers.
Shelly Houser is a congenital hemi amputee who was born without her right hip and leg. With this birth anomaly, she has endured different forms of scorn throughout her life from some people. Some people are helpful with their curious conversation, while some will shun people with these anomalies. Shelly wants everyone to know how to communicate with people like her effectively. She is passing on her life experience through her podcast series Life Beyond the Label while also educating nursing students at Villanova University on how to communicate with amputee patients openly.
What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf of others with a health condition.
Andrea L. Klein, of Cleveland, Tennessee, has collagen six intermediate congenital muscular dystrophy. She started a Facebook group, Breathe with MD Support Group, for people with a neuromuscular disease who struggle with respiratory health. Recently, she established a nonprofit organization with the same name.
Melissa Talwar, of Pasadena, California, has struggled with fibromyalgia since she was 14 years old. Her experiences with different medications and their alarming side effects catapulted her into focused research on the condition and potential treatments. After volunteering with a patient advocacy organization, and traveling around the U.S. to meet others with fibromyalgia, Melissa also established a nonprofit organization.
Deb and Darrin interview bestselling author Jenny Muscatell and her daughter, Miss Maine 2020 Faith Brackett. in Jenny’s memoire "The Journey of Faith and an Open Heart”, she takes us through the struggles and tribulations of 8 open heart surgeries for her infant daughter Faith, the death of her husband at a young age and her how her faith in God gave her the strength to carry on.
This is Lauren’s Story - A daughter with congenital heart defects on the Child Life On Call Podcast, hosted by Katie Taylor, Certified Child Life Specialist.
Little Everly is just over two years and has more fight and life inside of her than most of us could ever dream of. And she’s not the only one… prepare to be amazed by big brother too. Their mom, Lauren, shares with us her optimistic perspective even when they've had had their share of complications and setbacks.
Lauren mentions resources that include:
If you’d like to follow along in real time with Lauren, you can find them on Instagram, @happilyeverlyafter8417 or on Facebook you can check out their page titled Jack and Everly.
TWiV minus one reveals delayed neurological deficits in children without microcephaly born to Zika virus infected mothers, and N-glycolyl-neuraminic acid as a receptor for influenza A viruses.
Hosts: Vincent Racaniello, Dickson Despommier, Alan Dove, Kathy Spindler, and Brianne Barker
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Brianne - Foldable viral capsid models and Foldable models demonstrate T numbers
Alan - Laws Guide to Nature Drawing and Journaling
Dickson- NASA 50th Events
Kathy- Alta Obscura’s 17,069 strange and wonderful places
Vincent- TWiEVO 44: The enemy of my enemy is my phage
Anthony - Global Water Pathogen Project
Intro music is by Ronald Jenkees.
Send your virology questions and comments to twiv@microbe.tv
Bernhard Kühn, MD, is the director of research in Cardiology and an associate director for the Richard King Mellon Institute for Pediatric Research. The Kühn Lab focuses on cardiomyocytes and creating therapies that can help the heart muscle heal itself to recover from a heart attack or to help it restore a congenital heart defect to normal cardiac function without requiring surgery. He also reflects on the helpful collaboration with the cardiac surgery team here at UPMC Children’s Hospital of Pittsburgh.
The FDA approves the once-daily oral drugs Delstrigo and Pifeltro for HIV-1 infection. Also today, emicizumab beats factor VIII prophylaxis by a wide margin, orodental issues are often associated with facial port-wine stains, and epilepsy often accompanies congenital Zika infections.
Congenital Heart Disease (CHD) in infants presents as inadequate systemic or pulmonary blood flow, or heart failure from intra-cardiac shunts. Approaches to surgical intervention comprise primary repair, early palliation with subsequent repair or definitive palliation.
CHD palliation evolved in the pre-cardiopulmonary bypass era. In 1938 a patent ductus arteriosus was ligated, in 1944 pulmonary blood flow was established via subclavian artery to pulmonary artery anastomosis (Blalock, Taussig and Thomas), and in 1952 pulmonary artery banding was employed to protect pulmonary vasculature. In the 1950s-60s symptomatic infants underwent these palliative procedures with reparative intra-cardiac interventions delayed due to perceived risk. In the late 1960s emerging publications shifted the focus to early primary repair.
An exponential increase in the complexity of surgical repairs over the past 50 years have built on early innovation, exemplified by management of transposition of the great arteries. Surgical approach transitioned from palliative atrial switch procedures (Senning 1957 and Mustard 1963) with low early mortality but impressive late morbidity to the reparative arterial switch procedure (Jatene 1975) which remains standard of care.
Despite advances in the field, biventricular repair is not an option for all patients. Children born with a single functional left ventricle benefited from staged palliative procedures to the Fontan circulation. First described in 1971, the Fontan procedure established passive pulmonary blood flow, using the single ventricle for systemic circulation. Further innovation by Norwood (1981) facilitated similar staged palliation of patients with single right ventricles. While for most patients with functionally univentricular CHD, staged palliation is dictated by underlying anatomy, it is increasingly recognized that a proportion of these patients may have anatomy and physiology amenable to biventricular circulation.
As we embark on the next era of innovation in CHD, patient selection, multicenter collaboration and meaningful outcome measures are challenges to be addressed.
Hear David Rothstein and Mary Fallat discuss the importance of transitioning care for pediatric surgery patients with anorectal malformations to an adult colorectal surgeon.
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.
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.
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.
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.
On this episode of the AcademyU Professional Development Podcast Annual Meeting Expert Series, David M. Cognetti, MD, and Andrew G. Shuman, MD, discuss "Genetic Evaluation and Management of Congenital Hearing Loss."
Robyn Doyle is a full-time Caregiver to her daughter Bridget. She shares her PH story from Australia. Robyn shares why she’d like to be able to interact more with people who have children with PH.
My name is Robyn Doyle and I'm from Redcliffe, which is just north of Brisbane, Queensland, Australia.
My daughter was diagnosed at 16 with pulmonary arterial hypertension, and they've deducted that it was caused by her congenital heart disorder that she was born with. Sort of had a bit of a rocky life from day one, until this present time. Had a lot of ups and downs during that time. She has also other comorbidities as well, she born with another genetic condition as well, so that impacts on her pulmonary hypertension, as well. She has a rare condition called Kartagener Syndrome and that where the cilia in the lungs don't work properly. She gets treated the same as the cystic fibrosis, as in the lung component but not the digestion part. Obviously she's prone to a lot of respiratory infections, so when she gets a respiratory infection that increases the pressures in her lungs.
Yeah, so we've had quite a rocky life. She's always been somebody who needed care, sort of monitored and this is the first time I've been away for more than two nights. I've only ever had two nights away from her in 20 years. My husband's there looking after her, and her father, there's also her father. When she's good, it's okay, but when she's not well - she can't bend over to pick things up, she will need help with her showering, getting undressed. She has a problem with vomiting, with breathlessness, more than normal. She has a little dog because if she's unwell she can't take it out. Hope, the dogs name's Hope. It's that type of thing, so just with meals, helping with meals, yeah, it's a lot of extra care. She started university but only lasted a week because she had too many admissions in that year, so it just got too much for her.
She has a small group of very dedicated friends, but it makes it very hard socially for her, as well. Being socially isolated, not being able to do what other people of her age do. I've only recently joined Pulmonary Hypertension Western Australia, it's about, if I want to fly there it's about a six hour flight from Brisbane to Perth. Something that we may go there next year to catch up with the group, because I've a sister that lives there as well. I found that PH Western Australia is very professional, dynamic, inclusive, and only been going for a short period of time. It's amazing what they've now, with this patient directed pack, it's the first one in Australia that's just for patients. It's got a lot of different things that's included in the pack for patients, and for patients to give to health care workers that don't anything about pulmonary hypertension - like ambulance officers. When you got to a regional hospital that doesn't know anything about PH or the drugs, so yeah that's just amazing.
They've got a large group of different people in different areas they're working on, so it's not just two people doing the work, it's quite a good bunch of people. I'm very excited about hopefully going there next year and actually meeting people face to face.
The populations 24 million in Australia, but obviously a lot less in Western Australia and where I come from Queensland, so face to face support groups are very hard to get going. We have a little group at the Prince Charles hospital where my daughter goes to, but unfortunately it's only got about 15 people, or something, with carers that's total that come at the most on one session. A few years ago unfortunately we lost about three people, died, and somebody had a double lung transplant. Yeah, we don't have the population that they do in here in America to actually get ... Its really much better if you can actually talk to people face to face than on Facebook.
I'd like to be able to interact more with people who have got children, well she is an adult now, but at that same age. That's what I find I really lack, is sort of having that. I have got a couple of friends, but it's nice to have a group that's just for young people, also. Even though my daughter does go to a support group for heart teens, and young adults, but they only sort of meet every couple of times a year. It's hard, it's hard for her as well.
Good day, I'm Robyn Doyle and I know that my daughter is really rare, because with pulmonary arterial hypertension, only at 20 it's a bit of a life changing experience for her. Okay, thank you.
Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware
Robyn Doyle is a full-time Caregiver to her daughter Bridget. She shares her PH story from Australia. Robyn shares why she’d like to be able to interact more with people who have children with PH.
Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware
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