Child Life On Call: Recent Episodes
Katie Taylor, Certified Child Life Specialist + Podcaster
When it comes to the Coronavirus, how we inform our children is incredibly important. If you’re wondering though, how can we talk to our kids when we as adults still don’t know exactly what’s happening, you’re not alone. This article covers suggestions for age-appropriate language to use as well as general considerations to keep in mind as you talk to your children. Children are looking to adults for honest, easy-to-digest information. Break it down into a way that they can understand.
- Create an opportunity for open communication. There is a lot of information coming from news sources, TV, and the internet. Some of this information is factual, and some is not. Empower your children to ask questions when they hear information that feels unsettling and investigate together whether or not it is true.
- Instead of focusing on what we don’t know, however, focus on what we do know:
- This is a virus that is brand new and started in China.
- The virus acts like a cold or flu virus.
- This virus is spread through coming into contact with someone who is sick with the Coronavirus.
- Hand washing is the number one way to stop the spread of this virus.
- Talk to your kids like they are experts at handwashing – which they should be. Create a sense of empowerment and control over the spread of germs. “You already know how to stop the spread of germs through handwashing, covering your mouth when you sneeze or cough, and not drinking/eating after people. You already know how to stop the spread of germs!”
- Speaking of handwashing – Ask your child to walk you through their hand washing process. Soap and water is best, for at least 20 seconds, with lots of bubbles between fingers (I like using this visual as a way to help them get a good lather).
- As you sit down to talk with your children, It’s ok to admit that you don’t have all the answers. Some of the world’s smartest scientists and clinicians are still learning about this virus, and it would be remiss if we represented to our children that we had all the answers.
- Set a good example – don’t panic. Like other aspects of parenting, model behavior that you want your child to follow. Wash your hands after sneezing, after using the bathroom, and before meals. Consider taking a break from TV/Radio if the source is using fear-tactics and inaccurate information that is causing more harm to you or your child.
While there is little doubt that the Coronavirus has spread fear and panic quickly across the world, you are in control of supporting your child through their questions and worries. Educate yourself, use common sense, and trust accurate sources like the CDC for information as opposed to articles that come across your social media feed.
This episode is not a cancer story. This is a story about a loving family, a precious child, and how to find miracles during the darkest parts of life. In this episode, Katie interviews Scott Kramer, father to Maddie. Maddie was diagnosed with atypical teratoid rhabdoid tumor (AT/RT) at just two and a half years old and sadly passed away after 8 months of treatment. However, Maddie’s story is far from over. Scott and his wife are founders of Dancing While Cancering, a nonprofit that shares joy by delivering SmilePacks to children facing cancer. Support Dancing While Cancering and read more about Maddie’s story through Maddie’s Miracles and the The Miracles That Follow.
Follow Maddie’s story and Dancing While Cancering on Instagram, Facebook, and Twitter.
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In this episode Katie Taylor, Certified Child Life Specialist interviews Tara Geraghty, President and Founder of Making Cancer Fun. Tara is momma to Emily who was diagnosed with Stage 4 Neuroblastoma at just three years old. Tara used positivity and FUN to help herself and her daughter cope with their cancer journey. Tara is an author, webinar host, TedX Talk speaker, and just an all around inspiring person.
Follow Making Cancer Fun on Facebook, Twitter and Instagram and follow Tara on Facebook, Twitter and Instagram.
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This isn’t your typical Child Life On Call episode! Katie sits down with two other child life specialists and each talks about their journey into child life, some “child life wins,” and the hilarious things that kids have said to them over the years.
About twenty minutes in, you’ll hear Jamie second guess whether or not she should actually continue with the story she’s begun… there are lots of laughs!
This is a quick, fun episode that we hope bring you some smiles!
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This episode of the Child Life On Call podcast is different that what you’re used to hearing, but I fell in LOVE with a book called Tiger Livy and I knew I had to interview the authors.
Tiger Livy is the story of a brave six-year-old who inspires empathy, patience, and grit in young readers. It was created for children living with chronic illness but is a great read for any child, even if they’re not sick.
Co-Authors, Betsy Miller, who experienced her own limitations as a child and Erin Garcia, who grew up with a brother who required multiple hospitalizations, authored the book and in our conversation they give great insight into how friends and family members can support families facing challenges.
You can find the book here and see Betsy Miller’s other published books here. Follow along with the Tiger Livy Project on Instagram and Facebook.
Information on Juvenile Myositis can be found at www.curejm.org
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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:
- Ronald McDonald House Charities
- Starlight Children’s Foundation
- Books that Heal
- Happily Everly After
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.
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This episode features Alexandra Ortega, mom of three. She shares the stories of her two son’s Theo and Noah. First, we talk about her second-born, Noah, who suffered a traumatic brain injury during his birth at 35 weeks. Next, we talk about her third-born, Noah, who was born at 28 weeks. Alex talks about their NICU experiences, the ups and downs of having children with special needs, and how she copes herself. Alex’s words in this episode will resonate with anyone who has a child or loved one who needs medical care. She is inspiring and it’s an honor to share her story with you.
Follow along with Alex and her family on Instagram or Facebook.
This podcast is a place for parents and loved ones to find connection in one another’s stories.
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In this episode you will hear from Gillian, cohost of the For Grits and Giggles podcast. Gillian describe her personal journey that includes a cancer diagnosis for her infant daughter and life altering accident that happened a year after she finished chemotherapy. She shares her own personal struggles in coping and how she sought medical help, and she’ll describe how meeting another mom whose life paralleled hers turned into a lifelong friendship and a special bond that will stay with her forever.
To follow along with Gillian’s story, you can find them on Instagram.
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Meredith, mom to now 8-year-old Lola, shares her experience with her daughter who was diagnosed with Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) shortly after she was three-years-old. However, their story didn’t begin there.
As an adventure, Meredith talks about how she and her husband moved to Costa Rica from Indiana after they were married. Lola was born there and shortly after birth, her mom began having questions about her health and development. From infantile spasms to possible lissencephaly (smoothing of the brain), they searched for answers and were eventually led to the NR2F1 gene mutation which explained many of Lola’s symptoms.
Meredith gets real in our conversation about the ups and downs associated with having a child who is legally blind and has developmental delays. She talks about her own struggles and how she finds balance being a working mom.
If you would like to connect with Meredith, you can send her an email or find her on Instagram and Facebook at Say Hola Lola.
Please rate and review this podcast on iTunes so that it makes it easier for other parents and listeners to find us.
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It’s a moment that many parents on this podcast have talked about. Your at your ultrasound, pregnant with your child, and all of a sudden the mood of the room changes. Either the technician leaves, or a doctor walks in to “take a closer look” … a million questions and thoughts and fears run through your mind.
In today’s episode, you will get to hear from Jade Marie from Portsmouth England. At 16 years old and after being told she could never have children, Jade Marie was shocked to learn that she was 16 weeks pregnant. At at an emergency ultrasound less than 24 hours later, she learned that the baby inside of her had one of the most severe heart defects – she was missing the entire left side of heart.
In this epsidoe, we will hear Jade Marie describe what the journey with her daughter, Dawn Louise, has been like and what it is like to have a child with hypoplastic left heart syndrome.
Instagram: @DawnLouise_HLHS
Facebook: Dawn-Louise HLHS Blog
YouTube: Archer Adventures
UK HLHS Support: Little Heart Families
Listen to and read about more stories from parents of children with an illness or medical condition here:
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After a long fertility journey and a high risk, stressful, and very sick pregnancy, Stephanie gave birth at 26 weeks due to severe preeclampsia.
Stephanie, mom to Adeline, shares her experiences in the NICU and describes Addie’s difficulty with digestion. A long road of unknowns eventually led to a diagnosis of functional short bowel syndrome.
Stephanie shares her perspective about important topics like how having a child with an “invisible disease” can be a blessing and a curse, how she actually felt relief when they received Addie’s diagnosis, and how she handles tough to answer questions from well-meaning friends and families.
Stephanie talks about how she has been an advocate for her daughter and fought for a diagnosis, and how she continues to fight to give her daughter the best care possible and her family travels every 4 to six weeks to Boston from Baltimore to get Addie around and in front of experts in the field. Listen to Stephanie’s story on the Child Life On Call Podcast.
Follow Stephanie and Addie: @addie.belle + She Got Guts
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Belinda, a mom, certified child life specialist, teacher and creator of ChildLifeConnection.com shares her story with us today on the final episode of season two of the Child Life On Call Podcast.
As a cancer survivor herself, Belinda knew that she wanted her life’s work to positively impact hospitalized children and thus she became a Child Life Specialist. After getting married and having her first child, she applied her knowledge of child development and expertise with children to her own son when she began to notice that he wasn’t developing typically. You will get to hear how Belinda has used goal-setting and other self-motivating tools to help her son accomplish things doctor’s said he never would.
Belinda will also talk about her son’s autism diagnosis at the age of five as well as an epilepsy diagnosis a few years later. Belinda has helped her son in so many ways and has great advice and suggestions for parents facing similar challenges. If you would like to connect with Belinda, you can email her, or connect through her website and Facebook pages.
At Alex’s 20-week ultrasound appointment, she and her husband learned that their daughter, Lucy, had heterotaxy and congenital heart defects. From that moment, their lives changed and they became advocates and fighters for their spunky daughter who is now one year old.
In this episode, Alex talks about Lucy’s birth, surgeries, hospitalizations and ER visits. She talks about how their cardiologist became one of their biggest champions and what a difference the congenital heart defect online community has made for them.
Alex recommends the poem Welcome to Holland and the Mended Hearts organization for parents going through similar situations. If you’d like to connect personally with Alex, you can do so on Instagram or Facebook.
Alex would like to share Lucy’s diagnoses:
Heterotaxy: right sided stomach, midline liver and gallbladder, mirror lungs, asplenia. Congenital heart defects: complex Single ventricle with: complete unbalanced AV canal defect, hypoplastic left heart, double outlet right ventricle, total anamoulous pulmonary venous connection, pulmonary atresia, and bilateral superior vena cava.
Sarah shares her experience with a son who acquired a common called RSV and how it eventually led to pneumonia and being hospitalized for a week. We talk about some of the hardest parts of being in the hospital like waiting for a diagnosis, not being able to cuddle your child who is hooked up to oxygen and IVs, and trying to find ways to cope cope as a mother during the experience.
Sarah discusses about how this entire experience has changed the way she looks at health, being aware of spreading germs, not taking for granted the small moments in life like a cuddly or clingy toddler and being aware of what really matters in life.
Sarah shares tips from how to support a toddler for a week-long hospital in addition to the recovery period at home. She also talks about how one night nurse completely helped make their hospital experience so much better.
If you would like to follow along with Sarah you can find her on Instagram and Twitter. Thank you to Janet Anderson Photography for the beautiful pictures of Sarah and her family. Go book Janet Anderson Photography today!
At just 25 weeks pregnant, Courtney was diagnosed with pre-eclampsia and was hospitalized. Just 5 days later and after a terrifying emergent c-section, she would meet her daughter, McKenzie. In this episode Courtney talks about her entire experience from her own hospitalization and her daughter’s 5-month stay in the NICU, and eventually going home. She talks about the balance of being a single, working mom and the struggles that come along with having a child with medical needs. Courtney will leave you feeling inspired and in utter awe of how she loves and supports her daughter.
Courtney recommends Preemies – Second Edition: The Essential Guide for Parents of Premature BabiesHelping Your Child with Extreme Picky Eating: A Step-by-Step Guide for Overcoming Selective Eating, Food Aversion, and Feeding . If you’d like to connect with Courtney you can find her on Facebook, Instagram, Twitter or on her blog.
Thank you to Laura Morsman Photography for the beautiful pictures of Courtney and McKenzie.
Follow along with this podcast on Facebook, Instagram and Twitter.
Meredith, a nurse and mother of two, describes her experience as a new mom and what happened when her five-week-old had a fever. After several tests in the ER, she and her family learned that their new son had meningitis. Meredith talks about what their ER and hospital was like with a newborn.
Two years later and after suffering from several sinus infections and sleep apnea, her son underwent a tonsillectomy and adenoidectomy. Meredith talks about how they came to the decision to move forward with surgery and how she helped Joshua through his experience.
Torie is a young adult with gastroperesis. Torie’s journey has been a long one which includes a car accident, receiving total nutrition through an IV, NOT EATING FOOD FOR AN ENTIRE YEAR, and being told her illness was related to anxiety. These things, however, don’t even touch the tip of the iceberg when it comes to what Torie has been through. Eventually with the help of the device and taking control of her invisible illness through being diligent and sticking to a “Torie-Friendly Diet,” Torie has been able to eat food and live her life in a way that brings her joy.
Torie is currently a child life intern living in New York, pursuing her dream of becoming a child life specialist. Torie attributes her positive coping to keeping a grateful attitude, the help of her family and friends, and the people she’s met along the way that she refers to as “spoonies.” Torie recommends G-PACT, the Feeding Tube Awareness Foundation, The Spoon Theory, and social media to helping connect her with others going through similar experiences. You can connect with her on Instagram.
Torie’s optimistic and positive perspective on life is infectious, and we are honored to have the opportunity to hear her story. To follow along with this podcast, follow us on Instagram, Facebook or Twitter.
Lyndsey’s daughter failed her newborn hearing screening soon after birth, but it didn’t alarm Lyndsey since her son had also failed his first test after he was born. After a second failed test, Lyndsey was asked to return soon after for another exam from an audiologist. They would soon learn that her daughter had severe hearing loss.
Lyndsey talks about her experience and feelings with the process of learning this news and then deciding to go through with getting cochlear implants. She talks about how they came to that decision, the five-hour surgery, what it was like when her daughter heard her voice for the first time and then how they’ve moved forward with auditory verbal therapy. Lyndsey talks about how thankful she was for the resources and support from Texas Hands and Voices.
If you’d like to get in touch with Lyndsey and have any questions for her about her experience or the resources she mentioned, get in touch with me at Info@childlifepodcast.com and I will connect you with her. Thank you so much to Lyndsey for sharing your story with our listeners today.
A big thank you goes out to Laura Morsman Photography for the amazing photos of Lyndsey and her family. If you live in Austin, you need to book Laura Morsman Photography to capture beautiful moments of you and your family.
Connect with this podcast and learn more on Instagram, Facebook and Twitter.
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 program to help children with autism going through surgery.
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 congregation to helping her family cope with this experience.
If you would like to follow along with Nina and her family, you can find her on Instagram or through her family’s wellness business, True Whole Human.
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 issues. Regardless of the diagnosis, each of these parents have an important message and story to share.
In this finale episode, you will also get brief updates about how Season 1 families are doing now.
A big thank you to all those who listen, share, and enjoy this podcast. We are always looking to record and share more stories, and if you are interested in doing so, you can contact Katie at info@childlifepodcast.com.
Another big thank you to all the photographers who took photos of these families… you have given them and the world a gift that can never be replaced!
Check out this episode!
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 and researching your child’s specific medication in order to feel empowered.
If you would like to share your story, you can message Child Life On Call’s Twitter, Facebook or Instagram or submit your information on childlifepodcast.com or email info@childlifepodcast.com
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 purpose while dealing with his illness.
Roxanne wants parents to know that it is ok to vent, it is ok to ask questions and know that you are not alone. Roxanne and Rueben are advocates and aim to bring awareness to the rare disease that is encephalitis. Roxanne is currently in the works to bring an encephalitis walk to raise awareness in San Antonio.
Roxanne says that Chris Maxwell has been instrumental in helping Rueben cope with his illness. She also suggests that families visit EncephalitisGlobal.org.
If you would like to connect to Roxanne and follow along with Rueben’s Journey, you can do so here on Facebook or Instagram. If you’d like more information or to share your own story, please email info@childlifepodcast.com.
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 and the stigma associated with it provoked fear in the public who didn’t know much about the disease.
Liz provides incredible insight on how she dealt with news that could have easily darkened her world and every day life – She says to think about the worst case scenario and be thankful for the here and now and to choose hope.
Jamie shares her own experiences and memories surrounding how she kept her HIV a secret from her friends and classmates, and how her experiences at Hole in the Wall Gang Camp were a game changer for her and her confidence.
Liz and Jamie live with a glass-half-full mentality and talk about their most personal conversations, their hardest experiences and how they find joy in the small celebrations and challenges of life.
Jamie is the Child Life Director at Inova Children’s Hospital and pursued the career based on the fact that her own experiences led her to want to support other patients and families going through their own medical journeys.
Liz’s advice to other parents going through their own experiences would be to advocate for your child, you know your child the best and you are the first line of defense.
Jamie tells children and adolescents to ask questions and tell people what you need, build your support team, and become an advocate for yourself.
Jamie credits her mom to being the reason she is alive today and says that without her, she wouldn’t be loving life, living with her husband and talking about what she wants to do in her retirement. Liz tells us that Jamie chose hope. Medical science can leap frog over you, but choosing hope is what will get you through.
I have excellent news for you, and that is if you wish you knew MORE about Jamie’s experience about growing up with HIV, she has written a book! It is called “Surviving HIV: Growing Up a Secret and Being Positive” and you can buy this book on Amazon.
Please follow along with Child Life On Call wherever you like to check your social media, Facebook, Instagram or Twitter, and if you have any questions you can always write to me at info@childlifepodcast.com.
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 experience parallels emotions that she had in high school when she lost her mom to cancer. Mandy shares real stories about how others treat and react to Nolan, and she also talks about how incredibly adorable Nolan is and some of his favorite things: trucks, books, and a Bob Marley song.
Mandy also gives incredible advice about what she and her husband do to cope and gives these suggestions for other families feeling isolated by an illness or diagnosis:
1) Go hug your child and keep loving them – the diagnosis doesn’t define your child.
2) Try not to get too focused on the future, focus on making the most out of the present.
3) Don’t go through it alone.
4) Learn everything you can about your child’s diagnosis so you know that you’ve made the best decision you can.
If you would like to reach out to Mandy, please message me and I will get you in touch with her through email.
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 give Mandy and her family these gorgeous photos that they will keep forever. If you are near New Braunfels or Gruene, Texas, go book Gruene Photography. Follow her on Instagram or Facebook.
Thank you to Stephanie Sobic Gauthier for help in the storyline editing of this episode.
Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email info@childlifepodcast.com or submit your information via the website childlifepodcast.com.
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 give Mandy and her family these georgeous photos that they will keep forever. If you are near New Braunfels or Gruene, Texas, go book Gruene Photography. Follow her on Instagram or Facebook.
Thank you to Stephanie Sobic Gauthier for help in the storyline editing of this episode.
Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email info@childlifepodcast.com or submit your information via the website childlifepodcast.com.
Episode 6 features Tricia, a mama who lives in the southwest side 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 a review on iTunes. If you would like to share your story or have questions about this podcast, you can email info@childlifepodcast.com or submit your information via the website childlifepodcast.com.
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
https://www.livebinders.com/play/play?id=1666786 (This is the Texas Regional Day School for the Deaf and Hard of Hearing programs that Abigail referenced in her interview)
If you would like to connect with Abigail, you can find her on Instagram or Facebook. She also blogs here and at Austin Moms Blog.
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 live in Austin… book Laura Morsman Photgraphy NOW.
Take a look at the world’s first swaddle for hospitalized infants, Woombie Med Pods, from Barski Vail Designs.
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 leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email info@childlifepodcast.com or submit your information via the website childlifepodcast.com.
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 and introductory podcast for Child Life On Call. First episode to launch in June 2017.