Tiny Hero: Real Hope for CDH

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Tiny Hero: Real Hope for CDH

Tiny Hero: Real Hope for CDH - providing hope for Congenital Diaphragmatic Hernia babies everywhere!

Tiny Hero: Real Hope for CDH is a community built by and dedicated to the families of children born with Congenital Diaphragmatic Hernias (CDH).

09/08/2026

Every Tiny Hero has something that makes them light up!

Whether it’s sports, music, art, reading, dancing, or something completely their own, we’d love to see what they love to do.

Share a photo of your Tiny Hero enjoying their favorite hobby in the comments!

09/04/2026

Welcome to the Tiny Hero community! 💙

Whether you’re newly diagnosed, navigating the NICU, celebrating milestones, or remembering a Tiny Hero you love—you have a place here.

We’re so glad you’re here. Take a moment to introduce yourself, share your story, ask a question, or connect with another family who understands. Sometimes, knowing you’re not alone can make all the difference.

09/02/2026

We’re excited to introduce our first monthly coffee meetup for inpatient CDH parents at Johns Hopkins All Children’s Hospital in St. Pete!

Part support group, part social gathering, these meetups are a chance to connect with other parents who understand, share experiences, and find encouragement during the hospital journey.

RSVP by September 25: https://forms.gle/VZJNr1sSC6zWX3Z76

We’re starting at JHACH, but we know our CDH families are receiving care at hospitals all over. We hope to bring these kinds of meetups to more hospitals in the near future, creating opportunities for inpatient parents to connect with others in their own hospital community and find support during an incredibly challenging time. 💙

If you would like to introduce something like this at your local hospital, email at [email protected] to get started!

09/01/2026

September is NICU Awareness Month 💙

A baby’s NICU journey can look very different depending on the severity of their CDH. Some Tiny Heroes spend weeks in the hospital, while others spend months working toward that long-awaited day of going home. Behind every number is a baby fighting, a family waiting, and a team of medical professionals giving their all.

If you’re in the NICU right now, know that you’re not alone. We’re cheering for you and your Tiny Hero every step of the way. 💙

08/30/2026

Today, on National Grief Awareness Day, we pause to remember and honor the Tiny Heroes who are no longer with us. 💙

Though their time was far too short, their lives were meaningful, their stories matter, and their impact will never be forgotten.

To every family carrying the loss of a Tiny Hero—we see you, we stand with you, and we hold space for your grief. Your child will always be a cherished part of our Tiny Hero community.

If you feel comfortable, we invite you to share your Tiny Hero’s name or story in the comments so we can remember and celebrate them together. 💙

08/28/2026

Every Tiny Hero has a story. 💙
We want to see the faces behind those stories!

It’s time for a Tiny Hero roll call! Drop a photo of your Tiny Hero in the comments ⤵️

08/26/2026

A little update on Vaughn 💙

From Tiny Hero to almost FOUR! 🥹💙

Vaughn is busy doing what he does best—being a kid! He loves all kinds of music 🎶, is already rocking his pre-reading skills 📚, and is looking forward to homeschooling with his siblings this fall.

He still sees his CDH team each year and ophthalmology every six months, but these days, it’s mostly just music, learning, sibling fun, and lots of big hugs!

08/24/2026

Here’s to new backpacks, fresh notebooks, and exciting new beginnings! 💙✏️

Every school year brings new opportunities to learn, grow, and reach new milestones. We’re so proud of each and every Tiny Hero and can’t wait to see what this year holds.

Drop a first day of school photo in the comments so we can cheer them on! 📸🍎

08/23/2026

Meet Tiny Hero Lily! 💙 Diagnosed with left-sided CDH at just 16 weeks while her family was living in Germany, Lily’s diagnosis brought a lot of uncertainty. Wanting to be closer to family and receive specialized care, they made the difficult decision to relocate to the U.S. for the rest of her journey.

After 60 days in the NICU, Lily went home with a feeding tube. A few months later, she was completely tube-free and thriving! Today, she is a happy, growing little girl and a beautiful reminder that hope can carry us through even the hardest moments.

Read her story: https://www.tinyhero.org/tiny-hero/lilys-story

08/21/2026

A reminder for every CDH parent today: you are stronger than you know. 💙

Celebrate the small wins, hold onto hope, and know that your Tiny Hero’s journey is surrounded by a community that understands and is here to support you.

Address

5513 W 11000 N #235
Highland, UT
84003

Website

http://www.tinyhero.org/

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