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Pregnancy Pregnancy

FAQ on the CDH Diagnosis

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.

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Real Hope for CDH and CHD

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!

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CDH Preemies

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! 

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Preparing Siblings for CDH

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.

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Becoming a CDH Mom

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.

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Empowering CDH Siblings

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!

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Discharge Day is Coming

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. 

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Amniocentesis: What to Consider?

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. 

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Grandparents to the Rescue

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. 

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Pregnancy Pregnancy

What to Pack for your CDH Stay

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.

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Good to Come From Diagnosis

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.

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