Home > Support > Resources
Resources
Our resources are created by parents, for parents: practical checklists and questions to ask your doctor, a fact sheet you can share with family and friends, words of comfort and support, and useful outside resources, everything here is designed with lived experience at its core.
Looking for education and information about congenital lung malformations including our in-depth Parent Guides? Go to our education hub.
Looking to connect with a parent? Explore our peer support options.
Parents of CCAM/CPAM Babies (Facebook group)
This private Facebook group has been running for over 10 years and has helped thousands of parents connect with each other, ask questions, and share their experiences.
The Italian CCAM Association/Bambini con la CCAM
Organization based in Italy helping families through congenital lung malformation diagnoses with peer support, education and financial assistance. Support is available in English and Italian. WhatsApp +393291864884 | email info@bambiniconlaccam.it
Fetal Health Foundation (CPAM page)
Resources, research, and support for families facing fetal conditions, including lung malformations
Pregnancy resources
Postpartum Support International
Support for anxiety and depression during pregnancy and after birth as well as peer-led online support groups.
March of Dimes
Information and community support for pregnancy complications and newborn health.
National Maternal Mental Health Hotline
Run through Postpartum Support International, the hotline is available 24/7 in English and Spanish (in the United States). Text or call 1-833-TLC-MAMA
🚨 Crisis resources
- U.S.: Call or text 988 (Suicide & Crisis Lifeline)
- U.K.: Call 116 123 (Samaritans)
- Canada: Call or text 988 (Suicide Crisis Helpline)
- Australia: Call 13 11 14 (Lifeline)
- Elsewhere: Find hotlines worldwide at findahelpline.com
If you are experiencing a medical emergency, call your local emergency number right away.
Congenital lung malformation resources
For appointments
Appointment planner
Our appointment planner is a simple way to keep everything in one place: dates, weeks gestation, CVRs or measurements, notes and questions for your medical team. You can fill it out on your computer or print a copy to bring along to appointments.
CVR tracker
Use our CVR tracker to keep track of your baby’s CVR measurements. You can fill this in on your computer or print as a hard copy and bring to appointments.
Questions for your care team
We’ve put together some questions you may find helpful to think about when talking with your medical team. This checklist is a guide — it’s not medical advice, and your doctors will always be the best source for answers and guidance about your child’s care.
Sharing the diagnosis
Finding the words to tell others about your baby’s diagnosis can feel daunting. Some parents want to share every detail, while others prefer to keep it brief. There’s no right or wrong way — only what feels best for you. We’ve put together some ideas to make the conversation easier.
Fact Sheet
Our fact sheet is specifically written to share with friends and family who have questions about a congenital lung malformation diagnosis. It’s not as in depth as our parent guides but still answers all the questions people want to ask.
For communicating with friends and family
For your emotional health
Affirmations
Pregnancy with a lung malformation diagnosis can bring complicated emotions. These affirmations, written by moms, are here to remind you it’s okay to have mixed feelings.
Tips and tricks for getting through
Gentle, doable ideas for getting through a complicated pregnancy.