Any time a new baby joins a family, existing siblings are bound to feel a little confused and misplaced as they forge their new role in the family. Medical complexity can add an even more challenging dynamic. This can lead to feeling unmoored or powerless, but siblings of medically complex kids are true heroes too. Learn different ways to empower CDH siblings!

As parents, one of our primary roles is to teach our children all of the important things but, as CDH parents, we have the added task of teaching them specifically about a rare and complicated medical condition. Here are some tips for making sure you have a helpful and loving conversation that nurtures both their curiosity and your self-care.

With CDH, comes the potential for unexpected hospital visits. It is always a good idea to plan for these moments and have a plan in place for how you will handle various situations. There is nothing worse than trying to pull everything together mid-emergency, so do it now and be ready for anything that may occur!

Discharge. Going home. You can do this! Believe it or not, weeks or even months in the hospital have prepared you for bringing your child home. Be patient with yourself and give yourself grace. Nobody will tell you that taking care of a new baby is easy, especially a Tiny Hero, but yours is worth it. 

Poop issues – they get all of us at some point. And our CDHers seem to have a stronger tendency for it than most! And as any new parent will tell you, CDH or not, you’ll never spend as much time thinking about somebody else’s bowel movements as you do when you have a baby or toddler.

The 2022 Virtual Walk | Run | Bike will be here before we know it, and as exciting as it is to participate in raising CDH awareness, it can also be intimidating to think about navigating the event with some of the equipment that our Tiny Heroes will need to along. Here are some practical tips and ideas for making race day easier on yourself and fun for your hero too!

We're so excited for this year's Tiny Hero Virtual Walk | Run | Bike! By getting involved you can help raise money and CDH awareness in your community. Invite your friends and family to join in the fun and share your Tiny Hero's story on social media!

Having a baby with CDH will always come with a list of challenges. However, many of them can be eased when you prepare ahead of time. Here are a couple of ideas to use as starting points to prepare and give yourself a bit more peace of mind for the future.

As your CDH child gets older, the more they move. And the more they move, the more they get restless when they cannot run around. Do you get anxious just at the thought of having to go to the doctor's office with your little one just because of having to sit in the waiting room? We all have at some point, but here are some things that have helped other CDH kids make these trips more manageable. 

Upon finding out your child has a Congenital Diaphragmatic Hernia, one of the first big decisions you will likely have to make is whether or not to do an amniocentesis. This decision can feel overwhelming and confusing, but we are here to help you weigh the pros and cons. 

Many grandparents feel helpless as they watch their child struggle with the shocking news and wonder what they can do to help. We’ve put together some advice to help you navigate your new and difficult role because when handled with care, CDH has the potential to be an incredible bonding experience that only serves to bring families even closer together. 

I’ve put together two lists of what to pack for the NICU. One list is the essentials for mom and dad, and the other list is for things that can help you make the very sterile medical environment a little homier and more personalized—ways to celebrate your little warrior.

There's no doubt about it – a CDH diagnosis will change your life forever. It will be scary, emotional, overwhelming, and probably feel like a rollercoaster ride full of intense ups and downs at first. But through it emerges blessings you never expected and strength you never knew you had.

You've made it through a CDH pregnancy, delivered a Tiny Hero, sent your baby into surgery more times than you'd like to remember, and finally, after several weeks or months in the hospital, the word "home" was officially mentioned!

If your local hospital has estimated 4+ months, it never hurts to get a second opinion from a top hospital. You might be able to cut your stay in half and increase survival odds simply by relocating somewhere else.

And here we are seven years later. Life has "moved on," but the heart of Tiny Hero hasn't. We created Tiny Hero not only to share Adam's story but to support and celebrate you and your story. Though we may come from all parts of the world, there is one glue that will forever hold us together, and that is the common desire to fight for our Tiny Hero kids.

My family and the rest of the CDH community are here to support you along the way. This is one of the most supportive groups I have ever been a part of. Don't hesitate to reach out when you need help!

There is so much uncertainty and so many questions that still need answers before you can even start thinking about a baby shower. Yet, a baby shower can bring normalcy to a pregnancy that otherwise feels completely foreign.