Thursday, August 4, 2011

Spreading the HOPE

When I was pregnant with Bodie, God put several individuals in my path to make a very scary walk slightly less scary, to give me HOPE.

The first was Nancy Kim, the cardiologist who saw me my entire pregnancy and who would later become Bodie's primary cardiologist. After an unbearable appointment with the perinatologist who diagnosed Bodie, we headed across the hall to meet with the cardiologist who "happened to be" in the Prenatal Diagnosis Center doing consulations that day. (I use quotations, because there is no way our meeting was by chance - I believe God put me in that office when he did for a reason - on a day Dr. Kim was there.) Dr. Kim was amazing - she was thorough and compassionate and did not downplay the severity of the heart condition,but gave me my first glimmer of HOPE. She was the first one to tell me that while some hypoplasts have significant complications and the first year would likely be unbelievably rough, many do go on to lead normal lives. It was that HOPE that got me through my initial diagnosis and the weeks to follow. I will forever be grateful to Dr. Kim and what she gave to our family.
The second was Townes Hale and his mom Sara (and their entire family, really). I met Sara through the California Heart Connection, an online community of individuals whose families have been affected by Congenital Heart Defects (both parents of heart kiddos and adults living with CHDs). In this electronic age, it's common to meet other heart parents online. But to take it a step further and actually meet them in person is a little more rare. Sara and I did just that - and we happened to discover that we lived 10 minutes away from each other and her son, Townes (just 14 months older than Bodie) had the same surgeon Bodie would have and was treated at CHLA as well. The first time meeting Townes (I was still pregnant at that point) was incredible. To see this little guy, crawling around everywhere, as sweet and cheeky as could be, was a huge dose of HOPE for me. For the first time, I believed that our child could live a truly normal life, where no one looking at him would even know about his or her special little heart. Sara gave me a picture of Townes that to this day I have on the side of our fridge. For months, it gave me the HOPE to keep on going. I know for a fact that meeting Townes was a huge turning point for my husband. It was the first time he realized that our baby might actually be ok.
The third was Nate Marley and his parents, Debra and Bruce. Nate happened to be waiting in the cardiology waiting room with Debra and Bruce the day we had our consultation with Dr. Starnes. I remember her asking me if our baby had a heart problem. I answered that yes, our baby was to be born with HLHS. I expected her to be shocked (as most are when they hear about HLHS), but she just casually mentioned that her son had HRHS and had had the same surgeries our baby would have. I remember looking over at Nate, this BEAUTIFUL little almost-3-year old little boy, so full of life and energy and thinking no way!!! No flipping way could this totally healthy happy little guy really have such a major heart defect. For me, that moment was when it sunk in that maybe, just maybe, our child really could be just like any other kid, other than a broken heart. That moment was huge for me.

For me, meeting Townes and Nate gave me such HOPE and inspiration that it's hard to put into words, even today. And it's weird to say I'm on "the other side" because truly, I'm not. We still have at least one open-heart surgery in the not-too-distant future. So I guess it's fair to say I'm in the middle (but my mindset about that is a whole nother Oprah for another blogpost). In any case, I'm past the prenatal/Norwood/interstage craziness, thank God!!! But I'm still looking to older children for my hope for Bodie. I'm looking to "post-Fontaners" and especially the few HLHS adults I know for my hope that Bodie can continue to thrive.

And in the meantime, I'm trying to give back where I can, to pass along that same HOPE to moms just starting their journeys with this terrible diagnosis. Sisters by Heart is one way I'm doing that. In every package we send out, we include pictures and bios of our kids, so that these new moms can see examples of kids doing well and thriving despite their little broken hearts. And occassionally, I am able to reach out even beyond that and meet moms in person. I had the privilege of doing this last weekend, when I was up at my parents. I met an expectant mom through Facebook some months ago who was wondering how to go about finding an OB at UCLA, where she was planning on delivering her HLHS baby in the Fall. I asked her about UCLA vs. CHLA and one thing led to another and we found out that she is from my hometown!!! I've mentioned this before (when I posted about her benefit), but seriously, the town has 17,000 people, a good portion of whom are retired. C'mon people, what are the odds? Clearly, God had His hand in us meeting. Anyway, we had the opportunity to meet in person this past weekend! It was so fun to have both Melissa and her mother over for dinner on Friday night and just spend some time with them, trying to help Melissa prepare, as best as she can, for what's ahead. Trying to let her know what to expect. And, hopefully, giving her some extra HOPE as she was watching Bodie run around and rearrange furniture in my parents dining room.

Melissa, Baby Ella (still baking!), Bodie and me

Please keep Melissa and Baby Ella in your prayers as Melissa hits the home stretch (she only has a month left!!!) Thanks!



  1. Amy, you are amazing! My Bodie is amazing!

    Your family has enriched our faith... our lives so much.

    God bless you so very much.

    Give my Bodie a BIIIg hug and a kiss for me.

    Love you all,

    Nairi, Michael and kids

  2. There really is so much HOPE available to us parents now. I can't imagine how hard it had to be for the 'pioneer parents' when the Internet was not readily available. We are so lucky to have so many families that share their stories and provide HOPE, INSPIRATION, and FAITH!!!

    Thank you for continuing to share your journey.