When we hear the words, “I see a problem with your baby,” everything seems to come crashing down. We’ve included some of the most commonly asked questions we get related to CDH pregnancies and the more medical side of having a CDH baby.

We have compiled a list of questions and concerns regarding delivery that we hear often and hope they will help ease your mind and navigate this diagnosis.

Are you wondering how to help CDH parents? Here are several ways you can show support! Remember, we will find our new normal.

Each of us has been where you are. We have all felt the worst when getting that diagnosis. We all know these kids are Tiny Heroes! I hope you know that you are stronger than you realize, wiser than you seem, and worth every ounce of encouragement.

As we reflect on our time throughout this journey, our advice to other parents is to seek multiple medical opinions. It is essential to find a team who understands how each diagnosis collectively impacts the treatment options and care plan. We hope that her story reminds families that despite the uncertainty you may feel, especially with unexpected hurdles, there is real hope for both CDH and CHD!

In honor of World Prematurity Day and Prematurity Awareness Month, we celebrate all the amazing preemie Tiny Heroes and their strong families! Prematurity within the CDH community is not uncommon - you are not alone, and there is always hope out there. Although they may be tiny, they are some of the mightiest fighters! 

There is nothing easy about receiving a CDH diagnosis. The intense emotions that go along with any pregnancy, let alone a high-risk pregnancy, is extremely hard for all CDH moms. We want you to know that no matter where you are in your CDH journey – you are not alone!

Watching an only child become a sibling is so emotionally gratifying. It sets up moments of intense joy and interesting challenges as kids learn to share their parents’ time and energy. It’s a huge transformational time for any child, but being the sibling of a medically complex child can present real obstacles for kids. Don’t despair, we're here to help.

I wasn’t just his mom, I was his medical advocate. I became more than that – I am a CDH mom. He couldn’t fight for himself, so I did it for him, and I always will. I found solidarity in the Tiny Hero community. We are a community. We are a community defined by HOPE.

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!

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. 

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.

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.

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.