CDH Rainbows
Links
This is not a comprehensive list of links of all of the information out there on CDH. I hope that by providing these links, you will find some information that will help you. I have tried very hard to choose reputable sources of information; some may contradict with another. This is due to the lack of proven treatment for CDH and different approaches to such treatment. Talk with your medical staff to choose the course of action that is most appropriate in your case. Do not rely on any information found in these links.
When you click on a link, a new window will open and take out off of the CDHRainbows.org website. I have visited each website but do not ensure their veracity, safety or security. Please let me know if any of these are dead links or if you would like for me to add a link by e-mailing me. Some pages are in PDF format and you need the free Adobe Reader. That can be obtained here.
Support sites, CDH Activism sites and sites that offer valuable services
- A Heartbreaking Choice - Supportive and informative website for those facing termination of a pregnancy for medical reasons
- Baby Angel Pics - free photo retouching, removing medical equipment
- BabyCenter.com Termination for Medical Reasons Support Board
- CarePages - free websites/blogs
- CaringBridge - free websites/blogs
- CHERUBS - the original CDH presence on the web
- Cloud Nyne Photo Designs - photo collages and videos, donations benefit CDH research
- Letters for CDH - an effort to get national recognition for CDH
- My Tangible Peace - free memorial dolls (please consider a donation)
- Olivia Raine Foundation - financial help for funeral expenses for those who have lost an infant
- Poor Prenatal Diagnosis - excellent source of information for anyone facing a poor prenantal diagnosis
- Ronald McDonald House Charities
Children's Hospitals and Treatment Centers (pre- and post-natal care)
- The Brown Fetal Treatment Program
- Children's Hospital Boston 1
- Children's Hospital Boston 2
- Children's Hospitals and Clinics of Minnesota
- Cincinnati Children's Hospital Medical Center
- Fetal Care Center of Cincinnati
- Shand's HealthCare
- Texas Children's Hospital - CDH
- The Children's Hospital of Philadelphia
- The Children's Hospital - OU Medical Center
- The University of California, San Francisco (UCSF)
ECMO Links
General CDH Information
- A prospective study of the outcome for fetuses with diaphragmatic hernia from JAMA
- CDH from the American Journal of Respiratory and Critical Care Medicine
- CDH from eMedicine.com
- CDH from eMedicine.com (different)
- CDH from the North Carolina Guide to Baby Care
- CDH from Patient UK
- CDH from Pediatrics, offical journal of the AAP
- CDH: Our Experience - A Brief Review
- CDH: Overview from Gene Reviews
- CDH Repair from YourSurgery.com
- CDH: The Neonatologist's Perspective
- CDH: The perinatologist's perspective from Pediatrics in Review
- Congenital Malformations (book preview)
- Defect Size Determines Survival in Infants With Congenital Diaphragmatic Hernia from Pediatrics
- Diagraphmatic Hernia from MedlinePlus
- Diaphragmatic Hernia from Texas Department of State Health Services
- Diaphragmatic Hernia from TheFetus.net
- Diaphragmatic Hernia Repair from MedlinePlus
- Donor Funds Breathe New Life into CDH Research from Dream: The Magazine of Possiblities
- Handbook of Genetic Counseling/CDH from WikiBooks
- humpath.com: Congenital Diaphragmatic Hernia (WARNING: graphic photos)
- humpath.com: Diaphragmatic Malformations (WARNING: graphic photos)
- Lung Development A Breath of Fresh Air (WARNING: graphic photo)
- Maternal-fetal Medicine (book preview)
- Nihilism in the 1990's: The True Mortality of CDH from Pediatrics, the official journal of the AAP
- Real Hope for CDH: Kay's Kids
- Surfactant Levels in Congenital Diaphragmatic Hernia
- Texas Pediatric Surgical Associates
- The Toronto Star: After grief, crusader on a mission (Lauren Ziebart)
Genetic Information
- European Journal of Human Genetics
- Genetic considerations in recurrent congenital diaphragmatic hernia in two siblings
- Journal of Medical Genetics
- NCBI/OMIM
PPHN
- Brain-Type Natriuretic Peptide in the diagnosis... from Pediatrics, the official journal of the AAP
- Graphic/drawing of PPHN
- Hearing loss a threat to children who survive... from Science Blog
- INO in PPHN refractory to to high-frequency ventilation from Critical Care
- PPHN from the Lucile Packard Children's Hospital at Stanford
- PPHN from NicuWeb
- PPHN from UCSF
Treatment Studies (Some open and ongoing)
- A genetic model for a central (septum transversum)... from PNAS
- Airway Smooth Muscle Dysfunction... from the American Journal of Respiratory Cell and Molecular Biology
- Birth Defect Research for Children, Inc.
- Breathing Problems in Babies
- Congenital Diaphragmatic Hernia (CDH) Study at MassGeneral
- Chylothorax After Repair of CDH - A Case Report
- Fetal Endotracheal Occlusion (FETO) in Severe Congenital Diaphragmatic Hernia
- Improvement of pulmonary hypoplasia... from AJP, Lung, Cellular and Molecular Physiology
- Improving Survival of Neonates with Isolated CDH
- Late vs. early surgical correction of CDH
- Late vs. early surgical correction of CDH from Cochrane
- The Congenital Diaphragmatic Hernia Study Group
- UCSF CDH Current News & Research