Google here, Google there, Google everywhere!! 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 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. And my fellow heart moms - if you have more sources for information that I haven't listed, please share!! I am hoping to compile a page that can be helpful to new moms of CHD children, so they have a starting place for researching their questions. This is not an exhaustive list by any means, and I also limited it to medical care resources. I will do a separate post about emotional support resources later this week =)
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. This is the link to the PDF version online.
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Congenital Heart Defects.com - Although slightly outdated, this website has a host of links to online resources.
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.
Fellow Heart Mom friend blog post - What Every Pregnant Woman Should Know and Ask - This is a post I just read yesterday, and it is a wonderful resource for pregnant women. Because CHD's are the #1 birth defect, "Dr. Nina Gotteiner, a fetal/pediatric cardiologist at Chicago's Children's Memorial Hospital provides imperative information and a list of proactive questions that every expecting parent should know. "By asking these questions, expecting parents and their doctor can proactively identify heart issues before birth, and as a team, work together to prepare for any potential heart issues that may arise after birth."' - written by Alexa's mom
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. Obviously I will be posting in more detail about the groups in my support post this week, but they are 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!
I am also developing a resource page for feeding and nutrition as it relates to our heart kids. Because of their need for higher calories and special feeding requirements if needed (like feeding tubes, etc.) I feel there is a great need for this information to be in one place and specific to our heart kiddos. If you need some immediate resources or have some you wish to share with me, please send me an email - email@example.com. Just to mention a few sites, BabyCenter and Yahoo both have wonderful groups for tube fed children.
There is so much information out there, hopefully this helps in a small way to start somewhere!!
Also, don't forget to be following the CHD Awareness Week blog events:
Interview with a Heart Mom and Dad - WhenLifeHandsYouABrokenHeart
Daily Heart Stories - Aly Jean's momma
Liam's story is shared today on my friend Michele's blog - BabyHarrisBlog - Her son Maxson has the same condition as Liam and they were born just a few weeks apart. She is a dear friend who I hope to meet someday soon!