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!

If your local hospital has estimated 4+ months, it never hurts to get a second opinion from a top hospital. You might be able to cut your stay in half and increase survival odds simply by relocating somewhere else.

Being in a hospital room loaded down with so many machines that it becomes nearly impossible to find the baby is a parent’s worst nightmare. Hospital equipment can be daunting, but knowing what each piece does helps make a stressful situation a more understanding situation.

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.

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.

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