Today is Valentine’s Day. A day full of pink and red hearts, candy and sappy valentines. To a family of a heart transplant recipient, it’s a lot of other things, too. It’s the middle day of The National Heart Association’s Heart Month. It’s the last day of CHD Awareness Week (February 7th-14th). It’s also National Organ Donation Day. Valentine’s Day has always had a deeper meaning in our family since it’s also the day Steve proposed to me, and we made plants to love each other forever. We have a special family tradition I started when our little girls were young where we have a fancy dinner together with cloth napkins, candles and even a special dessert. Then we send the kids on a treasure hunt to find their valentines from me and Steve. When the girls were tiny, it was fun, easy, not really a big deal, but an opportunity to share a special time together and express our love to those sweet little girls. Then the boys came along, and after a couple more kids and a few years, it stuck. (What was I thinking?) I tried to not do the treasure hunt one year, and they all came apart on me, and told me I HAD to. So, the teenagers were running around helping the tiny tots. It’s kinda funny to me that the big kids enjoy it just as much. Now it’s just what we always do. Valentine’s Day (or a day or two before or after) is a family day for the Browns. (I’m pretty careful to make sure I ALWAYS get my date night with my first Sweetheart, too.)
With all the other national heart awareness stuff settling in my mind now — things I never used to know even existed — I’ve thought a lot about how many people are affected by those sweet tiny hearts that come hooked up wrong or undeveloped. Hearts that beat irregularly, too fast, or not long enough. Hearts that are worn out by the time those babies turn two. Hearts that have had so many surgeries in their first year that babies don’t even know where “home” is. And then there’s the grown-up hearts that literally break in two, knowing how hard their tiny baby is working to stay alive and there’s nothing they can do but hope and pray. CHD Awareness is making a difference though. Even though research is grossly under-funded, things have changed A LOT since our tiny heart baby came into this world. When Sarah was born, we had no idea that there was anything wrong with her heart until she turned blue and didn’t respond to oxygen. We were told there were some surgeries that could be done to prolong her life, but since the oldest person living with a Fontan was only 20, there wasn’t much known about her future. We were told she wouldn’t be a candidate for a heart transplant because it was too risky. I read an article just a few days ago about a little girl in Arizona with similar defects as Sarah that was headed home soon after her Fontan. It made me smile what the cardiac department head at Phoenix Children’s Hospital said… “It’s like London has half a heart, and that is fraught with its own problems. With one ventricle doing the work of two, London will require yearly echocardiograms and lifelong cardiologist checkups. Survivors with single ventricle often return to the hospital between age 20 and 30, at which time they will require a transplant.” I smiled because with 20 years of medical advancements and research behind us, these children are now often born with parents knowing what’s wrong with their babies’ hearts. Instead of wondering how many years they’ll have together before their hearts get too worn out, they grow up knowing that someday, they’ll get a new heart. To me, that’s a miracle. A totally different visual path than we had with our heart baby. And it makes me happy. Is it still hard? You bet. But, for many of these kids and their parents, the future seems to have a little more light in it than ours originally did.
With a focus on hearts and organ donation, I’m also reflective on a family or individual who made the decision to share a very special heart with one of my sweethearts. I’ve always been an organ donor, since I was old enough to put it on my driver’s license. It never really meant much to me, though, until there was a need for a life-saving organ in my own family. What an amazing miracle that is. That the decision to donate organs at the end of one precious life can save up to eight more. What an incredible opportunity to give of yourself. Having visited with a family whose daughter wanted to be an organ donor, I understand a little now of how difficult that choice might be when it comes right down to it, in the midst of the sadness and heartache. I honestly can’t imagine how tough it would be, but I like to think that now that we’ve experienced the miracle of organ donation first-hand, we wouldn’t even hesitate to share that precious gift of life with someone else. We are so grateful that things have changed so much in the heart world, and that Sarah had an opportunity to have a second chance in her life. We are grateful for her donor and their family, for making a tragedy in their lives into a celebration in ours, and probably others.
What an incredible world we live in now. A world of research, discovery, advancement, awareness, and more research, discovery and advancement. How blessed we are to live in a time and place where “blue babies” have a chance to live. Oh, it’s truly a happy heart day!