You just received the words “Your baby (child) has a congenital heart defect”. Your entire world crumbles. What does this mean? How did this happen? Did I cause this? What can we do? What will his/her future be like? The thoughts spiral, often out of control, and you find yourself lost in the deep end of “what-ifs”.
I’ve been there too. That’s why I created this guide. Five years ago my world got flipped upside down when I heard “there is something wrong with the fetus, we’ll need you to see a specialist”. I spent the first half my pregnancy wondering if it was viable, and then the second half worrying about what was going to happen after my baby was born. The joy of pregnancy was robbed from me, and I felt so lost, alone, and terrified. I had no idea that CHD was the most common birth defect, affecting 1 in 100 births. I didn’t have any direct experience with this condition, and I feared the worst for my baby.
Fast forward five years and I finally feel like I am on the other side of this journey. Living a “normal” life that I so badly yearned for while I was pregnant. This journey hasn’t been easy, but I’ve collected a lot of lessons learned along the way, those I want to share with you. In this guide you’ll find a collection of resources, links, support organizations, words of wisdom, and tips and tricks that I’ve found helpful in my journey. As CHD is a lifelong disease, this list will continue to grow and evolve as our journey continues, but my hope is that some day no parent will ever feel that isolating feeling when they too hear the words “Your baby (child) has a congenital heart defect”. Please note, this guide intended for informational purposes only and does not substitute for the care and expertise of a medical team. All medical related questions should always be directed to your care team.
Throughout this guide there are links to an optional online course module where you are able to go deeper into the content. If you’re interested in group or 1:1 support, please reach out to me and I’m happy to get you set up with the right go-forward plan for your journey. Even if you don’t reach out to me, remember it is always okay to ask for help. You and your family are not in this alone.
xo,
Nicole
Navigating the Notion platform
Below are links to each page. I have divided each into its relevant “stage” in the journey. Please feel free to click the applicable page of interest or explore the entire guide. Once you click on a page, you can drill down further by clicking on the tabs to expand information by heading. You can navigate back to the main screen by clicking the “Navigating the Emotional Journey” link at the top of each sub-page.
Navigating a High-Risk Pregnancy
Navigating the Postpartum Period as a CHD Mom