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Congenital Diaphragmatic Hernia: There's a Hole in my Floor! is a beautifully illustrated children's book that turns a complex and frightening diagnosis into a story of courage and hope. Through the playful metaphor of a "house" with an upstairs, downstairs, and a "hole in the floor," children and families learn what it means to be born with CDH—and how doctors work to repair it so little lungs can grow and breathe.
Told from a baby's perspective, the story gently walks families through prenatal diagnosis, life in the NICU, breathing support, surgery, and the slow, steady process of healing. Along the way, it acknowledges both the fears and the victories: the tubes, machines, and monitors that look scary, the joy of each stronger breath, and the reality that not every CDH journey has the same outcome.
With warm, kid-friendly language and comforting artwork, this book helps parents feel seen and supported, gives siblings and loved ones a way to understand what's happening, and helps the patient when they are older to understand where their scar is from. It's a heartfelt resource for families walking through CDH, offering reassurance that they are not alone in this journey.
The book also includes sections for parents and caregivers that describe the timing and goals of surgery, NICU expectations, lung development, and possible long-term needs like inhalers, feeding therapy, or developmental support. A "Doctors Words" glossary explains key medical terms (like ECMO, ventilator, mesh, laparoscopy, and TPN) in simple language so families can better understand their baby's care.
Expertly reviewed by a pediatric surgeon and by CDH International, this book combines medical accuracy with gentle storytelling, making it an invaluable resource for families, care teams, and anyone supporting a child with CDH.
CDH International supports children born with congenital diaphragmatic hernia and their families through research, awareness, education, and community resources. Learn more here: https://cdhi.org/