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 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.

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!

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.

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.

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.

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. 

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.