Trigger warning: In this episode we talk about death and dying.
Not every baby leaves the NICU but it has been Dr. Elvira Parravicini’s passion to serve those families with infants who have life-limited or life-threatening illnesses. The Neonatal Comfort Care Program seeks to address those needs and support those families from diagnosis, to delivery and beyond.
In this episode, we chat about:
How were you led from your specialty of perinatology and neonatology to your work in palliative care?
Can you define what palliative care means?
What is the Neonatal Comfort Care Program and how does it assist parents?
If a parent has a baby who has a life-limiting or life-threatening condition, what can they expect in a neonatal program and how does that differ from adult palliative care?
End of life issues are complicated and very personal, how do you accompany a family through an extraordinarily difficult experience while respecting their wishes?
If a hospital does not have a service similar to yours, what are some things a parent can do, or people they can reach out, to assist them in giving honor to their baby's life?
What's one myth you'd like to confront when it comes to palliative care?
What's your best advice to a parent who has a child who won't be leaving the NICU?
Dr. Elvira Parravicini is an attending neonatologist at NewYork Presbyterian Morgan Stanley Children’s Hospital, the Director of the Neonatal Comfort Care Program and an Associate Professor of Pediatrics at Columbia University Medical Center. She obtained a certification in palliative medicine from Harvard University. She was born, raised and went to school in Milan, Italy, and moved to the United States in 1994. Her passion for helping the most fragile patients in the neonatal population inspired Dr. Parravicini to create a unique and innovative program for infants affected by life-limiting or Life-threatening conditions. The Neonatal Comfort Care Program addresses the complex medical and non-medical needs of infants and their families. The interdisciplinary Neonatal Comfort Care team supports expectant mothers of babies diagnosed with a life-limiting condition during the perinatal journey, from diagnosis to delivery and beyond.
Palliative Care Training Course:
Connect with Dr. Parravicini:
Website: www.neonatalcomfortcare.com
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license
Trigger warning: In this episode we talk about death and dying.
Sometimes, families leave the hospital without their NICU baby. Misti Staley shares about the beautiful life of her son and how the challenges they encountered during his care inspired her to honor his memory after his passing. That outgrowth of generosity is now blessing NICUs and their families around the world.
In this episode, we chat about:
Freeman’s birth.
What devices/assistance came home with him and how did you adapt to those changes?
What is the Freearm and how did the idea of it come about?
What were some of the challenges (design or otherwise) you encountered when designing and marketing it?
How do you think this device can honor Freeman's memory?
What's your best advice to a NICU mom who is stressed about the devices or assistance her baby is discharged with?
Misti Staley's son Freeman was born in 2015 after a healthy pregnancy, but after birth, Misti learned of his many medical complexities. Freeman spent 3.5 months in the NICU, was home for 5 weeks and then spent 5 long months in the PICU, before sadly losing his battle with pulmonary hypertension at 10 months old. After Freeman's passing, Misti built Freeman Playground in Helena, Arkansas; an ADA playground with ramps and a poured in place rubber surface. Through all that Misti learned through Freeman's tube feeding journey, Misti also created the FreeArm- a tube feeding device that holds gravity syringe feeds, pump feeds and infusions at the hospital home and on-the-go. Freeman's legacy of love continues through Freeman Playground and the FreeArm.
Connect with Misti:
Facebook: www.facebook.com/freemanplayground/
Facebook: www.facebook.com/FreeArm
Instagram: www.instagram.com/freearm.tube.feeding.assistant/
LinkedIn: www.linkedin.com/company/staley-house-llc-creator-of-the-freearm/
LinkedIn: /www.linkedin.com/in/mististaley/
Learn more about FreeArm:
Find additional “fun” products to help your medically fragile child:
https://freearmcare.com/friends
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license
NICU baby skin is sensitive and often requires proper wound care, either from a lack of development or other treatments required by the NICU staff. Media Esser, a board-certified wound nurse shares common causes of skin damage, suggestions on making wound care easier and tried and true rules of thumb when caring for damaged neonate skin.
In this episode, we chat about:
What is a wound care specialist?
What is it that makes NICU/micropreemie babies’ skin so sensitive?
What are some common causes of skin damage in the NICU?
What are some questions parents or caregivers should ask to ensure they understand wound care treatment and techniques?
How do you know when what you’re doing is hurting, or helping, your baby’s skin?
What are some rules of thumb you use as a wound care specialist when working with NICU skin?
What is your best advice to a parent who is feeling overwhelmed by their baby’s wound care treatment or care?
Media Esser is a nurse scientist, neonatal nurse practitioner and board-certified wound nurse, currently in a Level II NICU in Green Bay, Wisconsin. Dr. Esser also holds the position of Assistant Professor and Neonatal NP Program Chair at Alverno College in Milwaukee. She is a consultant for evidence-based practice, a NICU review course content, quality improvement, skincare research, and she presents on all those topics on a local and national level. Dr. Esser is passionate about neonatal skincare, specifically diaper dermatitis in the NICU, and has published many manuscripts and chapters on the topic.
Links to Media’s research:
https://www.researchgate.net/profile/Media-Esser
Connect with Media:
National Association of Neonatal Nurses: https://my.nann.org/myprofile/profile?UserKey=a5ab1838-c37d-4dfe-8ed1-7de4d8c12dca
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license
So, your baby is having surgery. Whether it’s acute, routine or planned, pediatric surgeon Dr. Tory Meyer, shares what parents can expect, what questions to ask and how to approach the procedure with the best possible information.
In this episode, we chat about:
What led you to pursue a career in pediatric surgery?
What are the most common surgeries you perform?
For planned surgeries, parents have time to prepare their child for the procedure. What can a parent expect at the appointments leading up to the surgery?
What kinds of questions should a parent be asking of the surgeon and the surgical team?
In your opinion, what makes for a successful surgical experience for both the child and the parent?
For emergency surgeries it can often feel overwhelming and chaotic for both the child and the parent. How can a parent make the best decision with limited time? What questions should they be asking?
Sometimes there is a clear answer for a family when making a surgical decision and other times, it's not as easy. How do you help families decide the right course for their situation?
What's the best part about being a pediatric surgeon? Most challenging?
What's your best advice to a parent who has an upcoming surgery and feels scared and overwhelmed?
Tory Meyer is a Pediatric Surgeon at Austin Pediatric Surgery. He is the past Chief of Staff and past Chairman of the Pediatric Leadership Board at Dell Children’s Medical Center and is Clinical Affiliate Faculty at the Dell Medical School. Dr. Meyer is co-founding member of Operation KidDocs, a surgical mission group, and the present Vice Chairman of Westcave Outdoor Discovery Center.
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org
Follow Hand to Hold on social media:
Facebook: https://www.facebook.com/handtohold
Instagram: https://www.instagram.com/handtohold/
Twitter: https://www.twitter.com/NICUHandtoHold
YouTube: https://www.youtube.com/HandtoHold
The following music was used for this media project:
Music: Thriving Together [Full version] by MusicLFiles
Free download: https://filmmusic.io/song/10332-thriving-together-full-version
License (CC BY 4.0): https://filmmusic.io/standard-license
Music: Bright Colors Of Life by MusicLFiles
Free download: https://filmmusic.io/song/7855-bright-colors-of-life
License (CC BY 4.0): https://filmmusic.io/standard-license