Friday, September 9, 2011

All from a little idea...

A little over 8 months ago, I met a heart mom due with a baby with the same condition Bodie has. She was asking for advice and several of us been-there-done-that heart moms recommended purchasing some baby legs and side-snap onesies, since that's about all your baby can wear in a hospital setting. She went to Babies R Us and couldn't find either one. I remember reading her blog, feeling the sadness in her writing. All that she wanted was to buy something for her sweet baby and HLHS was robbing her of even that. I realized I knew where to get both side-snap onesies (only at Target, and only on a good day) and Babylegs (amazon or baby steals are your best bet). So I figured I'd pick some up and send them to her.

An inkling of an idea was born. Just a teeny tiny seed in the back of my mind. What if there were other new, heart moms with the same problem? Who couldn't find these items us fellow heart moms earnestly told them they needed? What if somehow us, been-there-done-that moms, could help somehow? So I asked my fellow heart moms if they wanted to help me put together a little package that contained some of these harder to find items.

Well, don't ever ask a group of heart moms to help you with a little project...unless you intend for it to have a life of its own faster than you can "please, can you help?" Within 2 days, Sisters by Heart was born - complete with a logo and a website. That was 8 months ago. To date, we've sent out over 90 care packages, which now include the original Baby Legs and side-snap onesies, along with bios of some of our thriving HLHSers, pacifiers, notepads & pens, antibacterial gel, lotion, adorable infant gowns with happy faces on them and "keep your hands off my kid" (but worded much nicer, of course) signs - all in a huge black bag with our logo on it (perfect for schlepping around the hospital). Our brochures are now in every top pediatriac cardiac ICU in the country. We're getting accolades from surgeons, from cardiologists, and most importantly, from the families we're helping.

In the first few months of SBH's inception, the other moms started talking about filing as a 501(c)(3) charity. My first reaction was "no way, no how. Not gonna happen." I had formed a 501(c)(3) back in my lawyering days and it was a ridiculous amount of work. And I loved my job as the CFO of a nonprofit, but I watched the development department and thought fairly regularly "thank God I don't have to be on the money raising end. Man, that looks hard!" But...we started raising money...and started gaining momentum. And I started praying - and realizing God had brought me to this moment, with my specific background, for a reason. So I started rethinking things.

On February 14 (kinda fitting, dontcha think?), we filed as a nonprofit corporation with the California Secretary of State. And in July, we had our first board meeting and filed for our 501(c)(3) status. And yes, it was every bit as much work as I had imagined (to put it in perspective, our IRS application alone was 14 pages, and that doesn't include the 26 pages of exhibits), but it was totally worth it. Because last weekend, we received the following letter:

To say that I am shocked, excited and proud is an understatement. From a little idea to a full-blown 501(c)(3) public charity in just 8 months is amazing. I am so proud to be a part of this amazing group of women and am so excited to see what's in store for this group in the future.

Won't you please consider making a donation to further our work? Help us continue to give hope. It's so easy. Simply click here and click "donate" on the right hand side - your contribution will be fully tax deductible!



  1. Amy, this is wonderful! Congrats on this major accomplishment! How do y'all go about securing items for the care packages? Do you still need donations for those items? Also, do you only send them to babies diagnosed with HLHS, or to any newly CHD-diagnosed family?

    Congrats again!

  2. What a Blessing!!! I also *just* blogged about that very issue. My 12 month old is going in for OHS in a few days and I can't find anything in 12mo sizes with a snap front. I've desperately searched Dillards, Kohls, Target, Babies R Us, Buy Buy Baby, and walmart. Nothing.

    I'm not devestated over it... we'll have him in some baby legs and pants. More angry at myself for assuming I could find these things and not thinking about it sooner!

    God Bless Sisters By Heart and all you do!!!

  3. <3 you Amy. :) You're amazing and I feel so honored that I am a part of your GREAT idea. :)

  4. Love ya, our team and our entire heart community - which extends to the medical professionals who support Sisters by Heart!

  5. Congratulations on the nonprofit status!

    @ BlessedMommy & SBH
    Carter's has a good (and cute!) selection of snapfront jammies for boys & girls:,default,sc.html

  6. Great to read!!! congratulations!!!