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.

Tiny Hero provides hope, resources, and support for so many CDH families. How do you give back to an organization that gives so much to you? One great way to do that is through raising funds to support Tiny Hero’s mission.

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 a parent, shifting mindsets from physical to behavioral health can be hard. Just as we thought we were near the end of our CDH journey, we began another one.

Being a working mom (or dad) is not easy – and being a medical mom who works can be even harder. Luckily, there are hundreds of families that came before us that can show us the ropes and make it all a little easier. They say raising a family takes a village, so we’ve rallied the “CDH village” to gather advice to help you navigate this balancing act.

Enrolling your child with CDH in school for the first time can be both exciting and terrifying. You have likely spent the last little bit protecting and sheltering them from germs, been their primary care provider, and the one to kiss the boo-boos. The idea of passing some of those responsibilities on to someone else can be overwhelming.

Sending your child with CDH to camp for the first time can be both exciting and terrifying. You have likely spent all school year protecting and sheltering them from germs, trying desperately to give your child a “normal” school experience while also keeping them healthy. While the idea of passing some of those responsibilities on to a teacher was likely not easy, the idea of passing it off to a camp counselor can be overwhelming. However, there are things you can do to help make the experience better for everyone involved!

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!

As you move through pumping for your baby through the NICU journey, be gentle with yourself. Your journey is uniquely yours and your babies. Every drop of breastmilk you are able to provide to your baby counts and is beneficial. No one else could do that but you, mama. You are an amazing mother – never forget that!

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!

Tiny Heroes sometimes have delays in their gross motor skills, but with some help early on, they can easily catch up in no time. Remember, these delays are typically not due to CDH itself. Here are a few fun activities you can do at home to help with any delays your child may be experiencing.

The Fore Hadley Foundation has been up to some incredibly critical work that we are excited to share with you, including funding a genetic research project with the Children’s Hospital of Philadelphia, which hopes to shed light on genetic variations associated with CDH.

Our Tiny Heroes transcend the odds stacked against them at every turn, and as they grow and develop, there may be times when you want a little (or a lot of) extra help in aiding them to meet their milestones and continue to surpass expectations. Remember, to give yourself some grace if there are delays in some milestones. Here is a guide of therapies that can help you and your baby!

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.