Congenital diaphragmatic hernia (CDH) occurs in an unborn baby when there is a hole in, or incomplete formation of, the diaphragm (the muscle under the lungs that is responsible for breathing). This hole allows the abdominal organs (e.g,. spleen, liver, intestines, stomach) to move into the chest and prevents the lungs from developing normally because of the lack of space to grow. The defect can occur on the left side, right side, or both sides. The defect is usually discovered on ultrasound before the baby is born.

Our mission is to help CDH families find the best care, a supportive community, and a hope-filled future. Many families feel completely lost upon diagnosis. Our goal is to provide resources, knowledge, community, and optimism to families seeking to provide the best life and medical care for their child with a CDH diagnosis.

CDH affects about 1 in every 3,600 babies (about 1,100 cases in the U.S. each year), and occurs as often as cystic fibrosis and trisomy 18, yet most have never heard of it. On average, 70% of these babies survive (up from 50% only a few years ago). By raising awareness, we want to help newly diagnosed families find hope when all feels lost.

Tiny Hero provides newly diagnosed families with care packages full of hope — this includes shirts, gift cards, a baby blanket and other comfort items to welcome them into the CDH community. We also provide financial grants to assist families with the large financial burden they are likely to face when trying to find the best care for their child.