CHD awareness month: Moms on a mission

I wasn’t sure what I could do after I found out Evan’s diagnosis.

I mean…surely his special heart wasn’t just meant to be….it had greater purpose.

And, slowly, this blog emerged.  Little by little a few of you…my faithful readers…began reading our journey.

You began to learn about what heart defects looked like…not the medical part of it…but the how it changes lives – all of it – the good, the bad.

I hope to eventually pen something for Heart Mamas, mamas with medically special kids, or just mamas – on the experience of being a mom who has been called to care for these extra special, little souls.  To show these mamas…hope lives on and in these journeys.

The next couple of days, I feel privileged to be sharing the stories of a few great women in the Heartland who I wholeheartedly believe are changing what this diagnosis means for our little ones.

These women took the fear, the anger, the unknown of what CHD looks like and are creating HOPE.


Meet Amy and Sister’s By Heart

On October 1, 2009, my life changed forever. I sat in stunned silence while a very experienced perinatologist told me that my unborn child would be born with ½ of a functioning heart. This doctor, with years of experience and numerous credentials, looked me in the eyes and told me my unborn child wouldn’t have a good quality of life and that we should consider terminating. I was devastated. It was not until I left his office and went home to research the condition that I realized how little he really knew, that he truly had no idea how much HOPE there is for children born with complex heart conditions. Little did I know that God would use that experience to prepare me for the road ahead, for a bigger plan than I could have ever anticipated.

 14 months, 3 open-heart surgeries and a pacemaker later, it was December of 2010, my amazing son was thriving and I was beginning to connect with other families in the CHD community.  When I read a blog post from an expecting mom about how she broke down in the middle of Babies ‘R Us, unable to find anything her son could wear after his upcoming open-heart surgery, I realized I could help provide her hope. I emailed a handful of heart mom friends and asked if they wanted to help me, to send this mom a package with Babylegs and a set of side-snap onesies, both of which her son would be able to wear after his surgery; and to somehow give her HOPE.

 The moms I sent that initial email to are AMAZING, their response was beyond my wildest expectations when I sent that email. Within days, Sisters by Heart was born, complete with a logo, a website and a plan to give new moms hope. 2 weeks later, that mom, and 2 others just like her, had Sisters by Heart care packages on the way. Those packages included a handful of items useful in the hospital, a welcome letter from us and pictures of our thriving HLHSers. That was the start of an incredible journey of determination, hope and passion.

 In the past 2 years since our inception, Sisters by Heart has experienced tremendous growth. Now a registered 501(c)(3) nonprofit corporation, we’ve sent out over 400 care packages, have over 12,000 individuals following our Facebook page and website, and have connected hundreds of families through our unique Linked by Heart network of HLHS families nationwide.  We’ve added 12 “Linker” moms to manage our Linked by Heart regions and 3 new members to our Board.

 Sisters by Heart has been such a blessing for me to be a part of. I have met some incredible moms through my work there, and have been so inspired by the families we’ve been privileged to serve. It really, truly has been a perfect example of one of those things in life where everything just “comes together,” and we were in the right place at the right time.

 Each of our Board members has her own motivation behind joining Sisters by Heart and working so hard to help our families. But for me, it’s all about that moment with my Perinatologist, where he gave me no hope. I never want another family to receive a diagnosis and to be given NO hope. Our dream is that every single family diagnosed in the US will also be given a Sisters by Heart brochure and told “There is HOPE.”


“You never know how strong you are until being strong is the only choice you have.” – how the journey to mend our son’s broken heart changed our family forever… – supporting newly-diagnosed HLHS families…one precious heart at a time…