Episode 192 | [Repost] Teresa's Story- A daughter with Spina Bifida and a Tethered Cord
Listen now
Description
This episode is a repost in honor of Spina Bifida awareness month.  Are you a parent of a child with spina bifida who is seeking support and guidance to navigate the challenges of raising your child? Are you looking for increased understanding, support, and strategies to help you and your child thrive? Join us as we welcome guest Teresa Crespo, who will be sharing the solution to help you achieve that desired outcome. Get ready to gain valuable insights and practical tips that will empower you as a parent and enhance your child's quality of life. In this episode, you will be able to: Gain access to intimate narratives of parents championing the hardships of parenting children with spina bifida. Learn the crucial role communication, and representation play in optimizing the welfare of children with spina bifida. Immerse yourself in strategies for handling bodily functions in children afflicted with spina bifida. Delve into the emotional facets impacting both parents and children and procure invaluable coping methods. See the assortment of beneficial products conceived for children with spina bifida and similar medical conditions. My special guest is Teresa Crespo Allow us to introduce Teresa Crespo - a mother, a problem solver and an advocate for kids with Spina Bifida. Hailing from Miami, Teresa's 14-year old daughter Isabella was born with this congenital disorder, which led her into a rollercoaster ride through the healthcare system. Also an entrepreneur, Teresa co-created 'Hidden Underwear', a solution for children, like Isabella, who want to blend in with their peers. Teresa's strength, determination, and warm demeanor make her a beacon of hope for other parents. The key moments in this episode are: 00:00:00 - Introduction to the podcast and Teresa's story 00:05:09 - Discovering something was wrong at birth 00:07:51 - The challenges of waiting for a diagnosis 00:11:02 - Understanding the diagnosis and treatment plan 00:12:30 - The importance of having a comprehensive view of the medical journey 00:14:19 - Understanding Spina Bifida, 00:15:05 - Bella's Prognosis and Challenges, 00:18:23 - Coping with Potty Training Challenges, 00:22:12 - Bella's Multiple Surgeries, 00:25:31 - Bella's Perspective and Coping, 00:29:20 - Validating Feelings and Effective Communication, 00:31:45 - Empowering Kids and Finding Language to Explain Their Condition, 00:34:23 - From Game to Business: The Inspiration Behind Hidden Underwear, 00:37:53 - Expanding Hidden Innovations and Helping More Kids, 00:40:10 - Resilience and Accomplishment in the Face of Challenges, 00:44:05 - Importance of Sharing Experiences, 00:44:38 - Finding Inspiration in Others' Stories, 00:45:37 - Hidden Underwear and Innovations, 00:45:59 - ChildLife On Call Resources Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent starter kit. When you download our starter kit, you’ll learn how to: Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing. Child life specialists, get affordable PDUs on-demand here. Shop for your CLOC gear here. Feel empowered with Child Life On Call's Mastering Immunizations: Expert Tips to Prepare, support and respond like a Child Life Specialist  Course for Parents, Child Life Specialists and Clinicians! 🌈👨‍👩‍👧‍👦💉  It is the only course you'll ever need to be able to prepare, respond and support your child at any age and stage for immunizations. Evidenced-based tips from a child l
More Episodes
In this episode host Katie Taylor sits down with Ashley O’Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay.  Listen to hear how she balanced work, advocating for her son’s needs,...
Published 06/26/24
On today’s episode, Katie had the privilege of speaking with Annie Gunning, a Certified Child Life Specialist and Grief Counselor, and Haley Thomas, a Licensed Master Social Worker, on their collaborative efforts to support families at Hope for HIE. Annie and Haley tailor their support to each...
Published 06/12/24