Sunday, January 2, 2011

Give Back and Light the Way

Ask any heart parent about the moment their child was diagnosed and they can tell you, in great detail, exactly how it happened, who was in the room, how they felt, what else happened that day. One of the most difficult aspects of the heart parent journey is that moment of diagnosis - the moment when your life changes forever. There is so much to process at that pivotal point and in the days and weeks to follow. Most newly diagnosed heart parents turn to the internet for answers and information about their child’s heart condition. Hypoplastic Left Heart Syndrome (HLHS) is, in particular, an extremely complex condition and much of the medical information available online is out-of-date and speaks of hopelessly outdated survival rates and lack of quality of life for single ventricle children. As a result, many newly diagnosed parents are left feeling hopeless and very much alone, forced to make critical decisions about their unborn child without a true understanding or complete picture of how well many of these children actually do.

I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children. Over the last few months, we formed Sisters by heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.

I know many of you who read my blog have been touched by Bodie’s story and the stories of so many of his heart friends and are eager to find a way to help. Here is your chance.

Sisters by heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.) We hold Sisters dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters or to learn more about our mission, please visit our blog at or email with any questions.

Please, join us in giving back and lighting the path for newly diagnosed heart parents.

From our hearts to yours,


  1. Like I said already Amy, this was the best way I could have imagined starting this new year, by receiving your care package. The info on the net is completely outdated as our kids are the data... so blogs like yours and hopefully mine will definitely help other newly diagnosed moms. I'm willing to help in any way that I can, first and foremost by raising awareness.

    Heart Hugs

  2. Such a wonderful way to support other families experiencing the same diagnosis. May the Lord bless you as you bless others.

  3. I cannot even put into words how amazing this is. I LOVE IT. If it wasn't for me finding success stories on the internet, Wyatt might not be here.


  4. What a perfect idea. Parents need to know that the diagnosis of HLHS is not hopeless, and that they are not alone. The internet can paint a pretty grim picture, and there's so many positives out there! :)

  5. Love it! What a wonderful idea and a perfect ministry! I checked out the sight earlier (via Jenny's blog) and it is adorable! :)

  6. Amy - This is amazing - I love the site and the mission. God has really used you, Bodie and your family in an amazing way. We continue to pray for you regarding all updates on your blog (my kids pray to and grin from ear to ear at Bodie and Sierra's pics). Love and Prayers, Bonnie & family

  7. Dear Amy,
    What a wonderful thing you and your other heart moms are doing. I'm sure it will offer so much hope to families.

    A little off topic but I know Body has a very important birthday coming up since he and Milosh were in the same due date club. I wanted to let you know about a wonderful non-profiet organization that matches up families with children impacted with critical illnesses with bakers to make free customized birthday cakes.
    Here is their facebook page
    or if you're not on facebook

    And the best part - siblings get cakes for their birthdays too!!! Since Bella and Milosh have birthdays a day a part they are both getting cakes! So Sierra won't be left out on her birthday!

    God Bless,