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.

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!

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.