Child Life On Call: Parents Of Children With An Illness Or Medical Condition Share Their Stories With A Child Life Specialist

Today's episode features two women. First, we will hear from Alexis whose son went through a fairly common surgery, ear tubes, and she will talk about what their experience was like. However, as child life specialists and parents we know thate despite how “common” or “routine” a surgery may be, those words don’t begin to cover all the emotions and experiences that come along with these "common" surgeries. You can follow Alexis through her business or her blog. As a part of celebrating child life month, after Alexis’ story we will hear from Liz Anderson, a certified child life specialist who has spent a bulk of her career working in with children and families going through surgery. If you are a parent you will definitely want to stay tuned so you can hear great advice and suggestions for parents whose children have upcoming surgeries. If you are listening to this as an aspiring child life specialist or as a current CCLS, Liz shares a lot of useful information about her experiences and also how she created a p

In honor of March and the fact that is Child Life Month, this episode features Shani Thornton from Child Life Mommy.  Shani shares her entrance into the child life field and how she chose to move forward in the field as a community-based child life specialist. Along with being the author of the children’s book “It’s time for your check up: What to expect when you’re going in for a doctor’s visit,” Shani is a big voice in the child life world as she has her own blog and shares valuable resources for parents and child life specialists on Facebook, Instagram and Twitter. In today’s episode, you will hear her talk about her child life career, current private practice, and how she's involved with the ACLP and community-based programs. Shani talks about her current role with the Standish Foundation, and my favorite part of the episode is when she gets real about finding the balance in her roles as "mom" and child life specialist.     

In this first episode of the second season of this podcast, we hear from a self-proclaimed "crunchy granola mom" Nina, whose fourth child was born with what she calls "a funny shaped head."  Nina goes on to describe her son's first few weeks of life and her appointments with her pediatrician and an osteopathic doctor. With little to no help from the osteopathic doctor, she trusted her instincts and returned to her pediatrician who then referred her to a surgeon at Children's National Medical Center in Washington D.C. and would learn that her son had craniosynostosis.  Nina then discusses their surgical journey and all that in entailed. In addition to the stress of building a new business and homeschooling three other older children, Nina talks about the challenges and emotions that she felt at that time. She also talks about how her view of what a hospital is like has changed and how she talked to her older children about what Cohen was going through.  She attributes the help of her friends and church congreg

This episode closes out Season 1 of the Child Life On Call Podcast. This podcast went from a dream to a reality thanks to the help of the all the courageous families who came forward to share their stories about having a child with medical needs. Season 1 covered the spectrum in illnesses, diseases and conditions, and all episodes had a similar theme: children are resilient and teach us more about the world and ourselves than we could ever imagine.    Katie gives life updates and talks about her need to bring to Season 1 to a close, but gives a preview of what is to come next season. In Season 2, you can expect to hear more brave parents come forward and share their inner most thoughts and feelings. We will talk about routine surgeries and the stress they can bring, as well as not-so-routine surgeries that can be life changing. We will hear from a parent whose daughter spent months of her life in the NICU after a scary delivery at 25 weeks, and we will hear from parents whose children have chronic health issu

At just six years old, Susan's son began complaining of belly pain along with other alarming symptoms. After a trip to the doctor, they were quickly sent to meet with a Pediatric Gastroenterologist and would eventually learn the news that one of her sons, Preston, had Crohn's disease. Susan shares personal details about their journey, procedures, and treatments that are associated with Preston's experience with Crohn's. She discusses how she and her family cope with living with this disease. Susan is honest, articulate and gives priceless advice to parents who may be going through similar situations.   Susan says that reaching out to her own doctor and support system was invaluable in helping her cope with a child who has an illness. She and her husband face each challenge with trusting fully in her sons health care team, leaning on each other, and prayer.    If you would like to connect with Susan, you can follow along with her on Instagram or Facebook. She recommends the Crohn's section on kidshealth.org a

Episode 10 features an interview with Roxanne, a mom of three from San Antonio, Texas. Just after entering high school and an outstanding performance in a football game, Roxanne’s eldest child, Rueben, began having high fevers and flu-like symptoms. After about a week, his parents found him having a seizure and rushed him to the emergency room. They would soon learn that Rueben was diagnosed with viral encephalitis. Roxanne tells the story of their stay in the Pediatric ICU, what it was like balancing being there for Rueben in the hospital while having a newborn and another child at home, and how family played a major role in getting through some of their darkest times. Rueben’s seizures continue after he returned home from the hospital, and during his sophomore year he was diagnosed with epilepsy which led to four invasive brain surgeries. Roxanne talks about what a critical role basketball was in Rueben’s life prior to acquiring viral encephalitis and how he continues to show his determination in finding pu

Episode 9 features an interview with Liz and Jamie. Shortly after Jamie was born, she developed a heart murmur and began passing out. Her mom, Liz, walks us through what it was like to witness such terrifying scenarios and how she began to become an advocate for her daughter. Despite being told that nothing was actually wrong with Jamie, Liz pushed harder and demanded tests that led them eventually to her diagnosis, Tetralogy of Fallot, a rare and serious heart defect.  Years after the surgery to correct the defect, they'd come to learn that Jamie had been infected with HIV during a blood transfusion. Throughout this episode Liz talks about how she made some of her toughest parenting decisions: how to tell her child that she had the AIDS virus and how much information to give her. She talks about how she coped with not knowing how long her daughter would live for, experts had guessed it would be about two years. Unlike most childhood diseases and illness, there were no support groups for children with HIV a

Episode 8 is Part 2 of Mandy and Nolan’s story. If you haven’t listened to Part 1, head on over to Episode 7 so you have a better understanding and appreciated for Mandy’s story. I mentioned that Nolan was scheduled for surgery and I’m sure you’re interested in an update… and this is directly from Mandy: The doctors were able to perform a scope of his airway to identify the obstruction that is causing the apnea; however, after getting a closer look at just how constricted his airway is, they decided they could not safely proceed with the surgery. We are now discussing a more involved approach to the surgery and exploring other options all together. We are disappointed but thankful to be working with a team of doctors so dedicated to finding solutions for our one in a billion patient. On this week’s episode, we learn how incredible Mandy and Nolan are and how MadB does not define him as a child. Mandy talks honestly and candidly with us about what it’s like to live with a child like Nolan and how the experienc

Episode 7 features the first part of Mandy’s story. Her son, Nolan, was born five weeks early with a host of symptoms which led them to find that he was diagnosed with a condition that only four other people are currently living with. Nolan is the ninth person in the history of medical science that has been diagnosed with Mandibuloacral Dysplasia Type B (Mad B). In part one of Mandy’s story, she talks to us about how doctors and specialists eventually came to diagnose Nolan. It ended up being an unsuspecting doctor appointment with a Dermatologist who had studied Progeria in medical school who wrote the diagnosis on a sticky note that led them to this rare condition. Part two of Mandy’s story will be available next Monday morning when she talks about what living with a child who has Mad B is like, how undeniably amazing Nolan is, and how she and her family cope with it. Thank you to Gruene Photography for the beautiful pictures of Mandy, Nolan and their family. We can’t thank you enough for taking the time to

Episode 6 features Tricia, a mama who lives in the southwest suburbs of Chicago.  Tricia bring a unique perspective and understanding of child development in her experience based on the fact that she has her masters in early childhood development and education, is currently an adjunct faculty member at Depaul University and is also a doula. In this episode, you’ll hear Tricia talk about the fight of a lifetime to find a diagnosis for her daughter, Cora, who is now 13 years old. After four and a half years of countless doctors and very little sleep, Tricia learned that her daughter has Rolandic Epilepsy. If you are going through a similar experience, Tricia recommends getting in touch with the Epilepsy Foundation and finding a local chapter in your area. If you happen to live in the greater Chicago area, she also recommends Danny Did and Equip for Equality. If you’d like to get in touch with Tricia, you can do so via her email, Facebook or Twitter. Please subscribe to the Child Life On Call Podcast and leave

Karen had a typical pregnancy up until the last few scary days when she was unable to feel her daughter move. After following her mother instinct, Karen went to the hospital and quickly learned she would need an emergent c-section. As emergencies go, everything was unexpected. In this episode, Karen walks us through what her daughter's birth and subsequent NICU stay was like. She talks about the unknown's of her daughter's health as well as how difficult it was to be away from her in those first 48 hours.  Karen shares with us how her husband and a dear friend who stayed at the hospital with her until 2  a.m. helped her cope, and encourages other mothers going through similar situations to know that they are not alone. If you would like to personally reach out to Karen, you can do so via Facebook or Instagram. Interested in sharing your story with our listeners? Get in touch with Katie here. Visit our website and connect with us on Facebook, Twitter and Instagram.  

After arriving at her 20 week ultrasound, Abigail, her husband and mother were anxiously awaiting to hear the news of their first child’s gender. However, the appointment took a turn when they learned that their son would be born with Spina Bifida. Abigail talks to us about that experience and their journey since that life changing moment. They’d come to learn that their son also had hearing loss and she talks about the challenges associated with it.   Abigail expresses her feelings about Teak’s diagnosis, talks about the incredible six (AND A HALF) year-old boy that he has become, and gives great advice to parents facing similar challenges. You can follow along and connect with Abigail through her blog, www.theheadhouseatx.com.   She recommends connecting with a Spina Bifida group on Facebook, she specifically has benefited from meeting other parents here. She also spent a lot of time on BabyCenter's Spina Bifida group when Teak was born.  Abigail also recommends the following resources: www.hearingloss.org

In this episode you will hear Kim talk about her experience in finding out that her son had Microtia Atresia, the interesting link to their family history and how that has affected her journey, and the tough decision about how and when to move forward with surgery. Microtia is a congenital deformity where the external ear is underdeveloped, and Atresia is the absence or closure of the external auditory ear canal. The malformation of the middle ear bones may be affected including the narrowing of the ear canal. This is a birth deformity that occurs in about 5,000 to 7,000 births. Kim recommends the following resources: Microtia.net Earcommunity.org Microtiasurgery.com Pedient.com If you’d like to connect with Kim, you can do so through her blog, The Hill Country Woman, through social media sites Facebook and Instagram, and she also blogs for Austin Moms Blog. A big thank you to the incredible photographer, Laura Morsman Photography for her beautiful pictures of Kim and her family for this episode. If you liv

Michelle’s story is one that took place over 15 years ago, and this is the first time she has spoken about it publicly. At the age of two, Brynn started developing inexplicable fevers which concerned her mother, an Emergency Room nurse. After trusting her gut that "something was wrong," Michelle brought her daughter in the middle of the night to the ER and shortly after was diagnosed with meningoencephalitis and in a coma for over a week. Michelle brings a unique perspective on relationships with healthcare providers, given the fact that she is and has been a nurse for over 18 years. You’ll hear her talk about the benefits of building a trusting relationship with your child’s pediatrician. She gives great advice about how to find that specific provider, and also talks about the importance of following your parental instincts. If you would like to connect with Michelle, you can do so here, Michelle on Facebook or through her email, mlbrahaney@gmail.com. Please subscribe to the Child Life On Call Podcast and le

After a long pregnancy on hospitalized bedrest, Kelli describes the birth and first year of her twin girls, one of which was born with two genetic conditions, Caudal Regression Syndrome and Goldenhar Syndrome. The journey to diagnose these conditions was a long one, and Kelli talks about what that process was like, and what is like to have a child with these two syndromes. Kelli recommends a several resources, www.isacra.com and the Goldenhar Syndrome Facebook group.   Kelli also recommends rarediseases.org’s network for a community of support and information on Goldenhar syndrome. If you would like to connect with Kelli personally, you can follow her on instagram at @kelita83, on her blog at www.babygruens.wordpress.com and at Austin Moms Blog. If you would like to share your story or have questions about this podcast, you can email childlifeoncall@gmail.com or submit your information on childlifepodcast.com.  

This is the first promotional episode for the Child Life On Call Podcast. If you would like to share your story, email us at childlifeoncall@gmail.com, visit our website at www.childlifepodcast.com, or find us on Instagram @childlifeoncall.   The first official podcast episode will launch in June 2017. Subscribe to be updated on our most recent episodes.