This is a post I've been contemplating for months now, a post I've been dreading. I think a part of me has resisted the idea of putting it in writing, for fear that sending it out for the world to see might make it real. The problem is, it is real, and denying it is not making things any better. Perhaps keeping it secret makes it a little easier, since it means fewer questions, fewer opportunities to receive sympathetic looks or reminders of what-could-be. I don't really want all of our family and friends to know, but I want the world to know. I want the world to get a little closer to understanding this mysterious occurrence. I want the world to know how to prevent this from happening, or at least how to fix it in less frightening ways. I want the world to realize that this isn't as rare as it seems, that it doesn't always happen to "somebody else." That having excellent odds doesn't necessarily mean they'll be in your favor.
Let me back up a bit. It was a chilly, exciting day. Darling came home early from work to help me pack up the kids and rush off to the appointment every parent anticipates, the ultrasound! We knew ahead of time that we wouldn't be finding out if our little one would be a he or a she, but we were so excited to get a glimpse of that precious little piece of our hearts floating around inside my rounding tummy. The ultrasonographer moved the transducer across my gel-coated tummy, revealing a wiggly, adorable little human. She clicked buttons, zoomed in, zoomed out, measured this, measured that, occasionally commenting on what she was seeing or how the baby was so active. Everything looked good. She soon zoomed in on the heart, a process I'd watched intently during previous pregnancies even though I had no idea why. As the minutes ticked away and the silence in the room became almost deafening, my own heart quickened its pace as I stared at the screen. Even though I knew next to nothing about reading ultrasounds or fetal anatomy, I could tell that teeny little heart didn't look right. It was pumping away, and the baby's movements assured me our little one was most definitely alive, but I knew there was something very, very wrong. After an eternity, the ultrasonographer tried to lighten the mood, but the look on her face and the slight shake in her voice gave her away. She mentioned that our baby was moving too much for her to see "what she needed to see" and that she'd feel more comfortable if we went to the hospital to have them take another look with their better equipment. In other words, she saw something concerning, but didn't have enough information to tell us anything. My heart sunk and I couldn't hold back the tears when she left the room to make the phone calls.
During the two hour wait between that appointment and having another ultrasound at the hospital, I felt hopeless. I was convinced our baby had just received a death sentence, and that it was only a matter of time before this precious little life would be cut far too short. I imagine a lot of mothers feel that way when they first find out their baby has been diagnosed with a Congenital Heart Defect. Thankfully, I was soon informed that a CHD diagnosis is not an instant death sentence or even a guarantee of a poor quality of life. It just means that our baby's heart was broken long before a teenage boyfriend or girlfriend gets the chance to do it. And instead of listening to sad break-up songs and going on a shopping spree, the only way to mend this broken heart is to face open heart surgery within the first week or two of being born. It's amazing and odd how the thought of surgeons slicing open my newborn's chest was actually a comforting concept at that moment, but it was far better than the idea of losing our little one completely.
Since that first day of becoming a "heart momma", I've learned either too much or too little about Congenital Heart Defects. It was something I'd literally never considered to be a possibility, since I have none of the risk factors associated with it, and the odds of a baby being born with a CHD are 1 in 100. Only one percent of babies are diagnosed with a CHD. Only one percent, yet now that number seems so much greater. If one out of every one hundred babies are born with these terrible, life-threatening problems, why have I never really heard about it? Why was I never educated about the signs of a CHD in a newborn or infant? Why are so many newborns discharged from the hospital, only to turn blue days or weeks later, often dying if the issue isn't discovered in time to save them? Why does nobody talk about CHD when it is the leading cause of death among babies and children?Why is it that my baby would have probably died within days of birth if it hadn't been for the ultrasonographer who noticed something was just a little bit different? If she had just gone through the checklist that the chambers were there and the heart was beating, we never would have known. Amanda Miller saved our baby's life. What about all those other babies who have ultrasounds done by people less thorough, less skilled?
I will likely spend the remainder of my pregnancy attending appointment after appointment, going from denial to despair to faith over and over again. Some days I'll do my best to forget or ignore the path that lies before us, and other days I'll sob over the the thought of handing my tiny baby over to have his or her first open heart surgery. On other days I'll pray and pray and pray, clinging to the only hope I have in all this: God is in control.
We have been extremely blessed to have an early "in utero" diagnosis and an excellent medical staff following our experience every step of the way. We are also blessed that we have awesome insurance to cover all of our medical expenses, unlike so many other families who are also dealing with a CHD diagnosis. If you would like to help CHD families in some way, here are some things you can do:
1. Get educated about congenital heart defects. Know the signs to watch for, the questions to ask during routine ultrasounds, and find out if your local hospital(s) perform the pulse oximeter test on all newborns. Share this information with all the expectant and new parents you know.
2. Donate money to organizations or fund raisers that either help with CHD awareness and research, or with families who are facing financial difficulties from the medical bills incurred during CHD testing and treatment.
3. CHD babies and children require multiple blood transfusions during their lifetimes. You can help by donating blood to your local blood bank and encouraging others to do the same.
4. Some babies have defects are too severe for surgeries to correct, and they require heart transplants in order to live. Make sure you sign up to be an organ donor, and make sure your loved ones know your wishes.
5. Pray. Pray for the patients, the families, the doctors and staff, and those who do research to find out how to effectively treat, and hopefully one day prevent CHD.