We were at a dead standstill with a baby who was miserable while attempting oral feeds and missing out on developmental opportunities because he was confined to a hospital room. It was time to have a care conference and discuss moving forward with a G-Tube.

If I can give you any advice, keep an open mind and remember that it’s okay if your CDH journey doesn’t go 100% according to plan. If a G-tube is needed, view it as a valuable resource and know that it helps your baby meet with success. Also, never stop advocating for your CDH baby. Ask medical professionals and lactation consultants any questions you may have along the way.

A tracheostomy provides an air passage to assist breathing when the usual route is either blocked or reduced. CDH babies may need a tracheostomy to facilitate breathing, dependent on their diagnosis.

Flying with your medical complex CDH baby, all of their equipment and the fear of germs can be very overwhelming! We have put together a list of our best tips and tricks to make this experience as stress-free and easy as possible.

My advice to families facing the decision about whether or not to grow their family is this - stay positive and don’t let the fear of CDH keep you from pursuing your dreams and growing your family. There is a 2% chance it may happen, and if it does, there are doctors with over 90% survival. There is hope!

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.