I’m always tempted to make big promises when we’re getting ready for a medical procedure. I want to tell my kiddo that we’ll go on a big trip or have a special adventure as soon as we’re done. But I know that recovery can be unpredictable, and I never want to make a promise I can’t keep. Instead, try to find something you can deliver on, even if things don’t go as planned.

“Being an advocate” was something I had heard of, but it really didn’t mean much to me until I received our CDH diagnosis. I had mostly just heard of that phrase as it pertains to “patient advocacy” when I was going to nursing school many years earlier. I never guess that being an advocate would be a role I would take on in a new way, and become one of the many hats I now wear as a parent.

We are honored to have you be a part of this journey to infuse the CDH world with the optimism, understanding, and support that this community needs. We invite you to come along with us because together we are stronger!

Like the rest of you, I have struggled with the events of the past two weeks, and am still trying to wrap my brain around our state as a world. Interestingly, on several occasions, my mind has been drawn to memories of our first days after diagnosis. I know you will relate as I set the scene.

I would never wish a CDH journey on anyone, but I'm so grateful for who our family has become because of it.

Our hearts go out to all CDH families everywhere- we are all victims and survivors in one way or another, and the heavens are filled with too many CDH babies who left this life too quickly. We know God’s hand is in the details of our lives, and praise Him for guiding our every step in this journey.

Everyday our community strives to redefine impossible. We change the mindset that there is no hope for CDH. We define CDH, not as Congenital Diaphragmatic Hernia, but rather as a Community Defined by Hope.

Jacob Dunford, 22 year old Development Director at Tiny Hero shares his perspective working with CDH families and kids.

It all begins with an idea.