The CDH Foundation will connect any newly diagnosed family with Tiny Hero and other CDH parents and resources. We will follow you and celebrate the birth of your baby. We will rejoice in every milestone and achievement. We will mourn every setback. At NICU discharge we want to be a key point of contact for any issue you need to navigate.
This handout is for families who have just received a CDH diagnosis to give to friends and family to help explain the birth anomaly.
Tiny Hero is another non-profit that supports CDH Families. They are located in Utah and were founded by the Zolman family after their youngest son was diagnosed and treated for CDH. This organization has been very collaborative with the Sensigreen CDH Foundation and we appreciate the support and hope they provide the CDH parent community.
Many CDH families seek care far from home. Ronald McDonald House Charities have locations at many major medical centers and provide a safe and affordable place where families can relocated and stay together for the duration of their child’s hospital stay.
This handout is for parents to give to loved ones who want to visit their CDH baby once they are home. Many parents will set strict boundaries for if and when people visit. This will help loved ones understand what parents set these boundaries.
When parents are given the news that their child has a very serious and life threatening birth defect most have no idea where to even begin looking for the best information, the best physicians and support. Our friends at Tiny Hero compiled this outstanding list of questions that parents can use to interview one team of physicians and caretakers or countless teams. It has been put together with the input of many families and is very comprehensive.