Does this sound familiar? Have you been told that the key to raising a child with spina bifida is to simply stay positive? But deep down, you know that staying positive alone doesn’t address the challenges you face every day. The constant worry, the emotional toll, and the struggle to find effective solutions can leave you feeling overwhelmed and alone. It’s time to break free from ineffective advice and find real support, understanding, and strategies that can truly make a difference in your journey as a parent of a child with spina bifida.

We work with somebody independent and that’s what I wanted, somebody to actually have different perspectives and hear us, hear my husband, hear me, and work with my daughter to actually help us navigate through this. – Teresa Crespo

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.

This is Teresa Crespo’s story:

The birth of Isabella brought an unexpected challenge into the life of Teresa Crespo. Amidst the hustle and bustle of Miami, Teresa was living an idyllic life until that fateful 37th week of her pregnancy when a routine checkup revealed a concerning anomaly. Suddenly, Teresa was plunged into unknown territory, grappling with medical complexities and the fear of the unknown. Isabella was diagnosed with spina bifida, a condition that was as foreign to Teresa as the maze of medical terminologies she was thrust into. Despite the initial fear and anxiety, Teresa soldiered on, driven by the love for her daughter and the determination to give Isabella the best possible care.

In this episode, you will be able to:

• Encounter inspiring stories of parents overcoming obstacles in raising children with spina bifida.
• Understand the gravity of open dialogue and activism for the well-being of children living with spina bifida.
• Get exposed to practical approaches for controlling bladder and bowel movements in children with spina bifida.
• Appreciate the emotional impact on families and obtain helpful mental health support.
• Appreciate the variety of helpful products tailored for children having spina bifida and other health challenges.

Wisdom gained from personal journey
We all have our little wisdom pearls, don’t we? Those hard-earned truths life teaches us through its varied experiences. We learn, we grow, and wisdom is that invisible by-product of the journey. It keeps us grounded and guides us forward. A great epitome of this truth-seeking continues to emerge in stories of parents like Teresa. In the face of life-altering prognosis, Teresa found resilience and determination in her daughter, Isabella, who let no obstacle outshine her academic excellence or dampen her positivity. You see, Isabella’s journey is not merely about surviving or thriving despite her condition, but more about the broader life-lesson it brings—focusing on solutions over problems. That’s courage! And that’s the wisdom Teresa shares fervently for others walking a few steps behind, on the same journey.

Highlighting bright aspects of life
Many poets belive that a life spent in the pursuit of knowledge, understanding, and growth is a life well-spent. And what’s incredible is just when you think you have mastered the art of living, life throws a curveball that sets you off to learn anew, bringing its own set of silver linings. When Teresa recounts her journey with Isabella, you can feel the life lessons their experiences brought. They learned, they grew, but perhaps the most impactful was the realization of how hardships brought their family inextricably closer. For parents like Teresa, these situations often inspire shifts in roles—like how she found herself donning the researcher’s hat—to find the best care for her daughter. More power to you, Teresa!

Significance of Faith & Strength
Life’s unexpected twists can sometimes serve really tough challenges. It’s in times like these, tapping into our deep reserves of faith and strength presents the only way forward. It’s like that inner GPS guiding us through uncharted territories, allowing us to navigate the choppy waters, maintaining our sanity and filling us with hope for brighter days ahead. For Teresa and her family, this is hardly a foreign concept. She found strength in her faith, powering through testing times in their journey with Isabella’s condition. Inspired by Abigail’s tale of similar struggles and her steadfast faith, Teresa felt a greater faith-resolution herself. It only affirmed her belief that, call them tests or trials, each trying phase eventually leads to happier days, to beautiful lives even when they look different than what we had initially imagined.

The resources mentioned in this episode are:

• Listen to the full episode of Teresa’s story on the Child Life On Call podcast.
• Visit the Hidden Innovations website to learn more about Teresa’s company and the product she created for her daughter.
• Educate yourself about spina bifida and its different types by doing research online or speaking with healthcare professionals.
• Consider reaching out to a child life specialist for support and guidance if you have a child with a medical condition or diagnosis.
• Advocate for collaborative care by requesting a family care conference with all of your child’s specialists in one room to discuss their case.
• Connect with other parents who have children with spina bifida or similar medical experiences through support groups or online communities.
• Support Spina Bifida Awareness Month by sharing Teresa’s story or other resources on social media to raise awareness and promote understanding.
• If you are a healthcare professional, consider listening to expert episodes of the Child Life On Call podcast to gain insights and knowledge on how to better support families.
• Take the time to validate and support parents who are navigating the complexities of healthcare by offering empathy, understanding, and a listening ear.
• Become a confident advocate for your child by educating yourself about their condition

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.