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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist


Oct 18, 2023

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

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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.

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