When Liam was first diagnosed, we had no road map to navigate our way through medical terminology, prognosis, support or care for our child. Because we had never heard of a CHD, didn't know just how common they are, we didn't know where to get to get the support we needed. We also were not in a state of mind to process a lot at that point either, given that we did not find out about Liam's condition until after birth. Granted we did have excellent medical care for him and a local support group that consistently pursued us to come to meetings (Thanks ALH!!), beyond that it was up to us.
Resources and support are important because if you don't know what you are dealing with, you don't know what questions to ask. Educating myself on Liam's condition was extremely important in handling his care. And knowing the right questions is also very important. Parents are the best advocates for their children and we must have appropriate resources to make the day to day decisions.
Below I listed some resources I have found very helpful in my quest to educate myself on Liam's condition and caring for his special needs with feeding. This is not an exhaustive list by any means, and I did include here some support information, as well as information you can provide to others in useful ways.
National Heart Lung and Blood Institute - Research for specific CHD types, also gives common treatments available and what to expect.
MayoClinic - Researching different types of CHD, with great multimedia presentations for visual learners!
It's My Heart - Publication that discusses CHD's, types of CHD's and also the procedures and surgeries, in layman's terms. Created by the Children's Heart Foundation.
American Heart Association - Guide for parents of children with CHD's. This site also has a very nice FAQ section of "What if my child needs..." type of scenarios, with linked information for common diseases and disorders that are frequently found in children with CHD's.
Congenital Heart Defects.com - Although slightly outdated, this website has a host of links to online resources.
Please also check out my sidebar, where I have links to some of our favorite CHD related sites, under "Links We Love"
Prgenancy Awareness Resources for Others
5 questions to ask at your 20 week ultrasound appointment - vital information you need to ask about your baby's heart. - Important information that can help detect heart anomalies, and questions to ensure the sonographer has thoroughly checked the heart.
Information about newborn pulse oximetry screening tests - A simple test done at birth that can save your child's life.
Support and Other Resources
Book - Your Critically Ill Child: Life and Death Choices Parents Must Face - This is a great book for all parents of critically or chronically ill children. This really helped me see how the PICU operates and what the limitations and challenges the doctors and nurses face when dealing with critically ill children. It is written by an intensivist and he openly and honestly expresses his thoughts on different situations to support parents in making decisions for their families in critical times. It also empowered me to be a better advocate for Liam when in the hospital setting and provided me the insight and encouragement needed to do so successfully.
A Different Dream for My Child,
by Jolene Philo - This is a meditation/devotional book for parents of
critically or chronically ill children. It is a wonderfully
insightful, powerful and intimate look at caring for your child, from
diagnosis and beyond. Using scripture to reference the various "stages"
(such as diagnosis, hospital life, home life, long-term care, etc.),
this book reads very much like a devotional. Very handy to have a copy
on hand for anyone you meet who has a newly diagnosed child....I truly
believe it would be a blessing to have a copy from the beginning, but
more than worth it to read wherever you are in your journey.
Blogs and BabyCenter Groups - These have been vital for information that is specific to each child individually, but also can help you to look to the future of your child's issue and help find resources specifically with what your child is going through. A good resource for finding out what to expect during hospital stays, procedures and surgeries. The list of blogs I follow is on my sidebar. These amazing families have helped me in all sorts of ways. Please take some times to visit their pages!