Recently I've been following a blog about a baby with Hypoplastic Left Heart Syndrome (HLHS). It's a heart defect that causes the left side of the heart to be underdeveloped. The baby's father, Matt Hammitt, is the lead singer for Sanctus Real, an awesome Christian band (who happens to be coming to Rochester next month...I may have to go). Anyway, I found out about the blog after I saw a posting on Facebook about it, via a Christian radio station that had been giving their listeners updates so they could pray. The blog's address is http://bowensheart.com. The baby, whose name is Bowen, was born in August. He's been a little fighter ever since. There have been lots of ups and downs, but he's still hanging in there. He's got a lot of surgery in his future and already has a pretty significant scar down his chest. At one point his heart stopped and the medical staff spent a half hour pumping his heart through his open chest until the surgeon arrived. While his parents watched. I can't even imagine. Among the ups was the opportunity for the parents to hold their little boy fairly soon after surgery, after being told it would be weeks until they could hold him again. Can you imagine? Many postings on that blog have left me near tears. I just can't even fathom.
Even worse, there have been a couple stories that have come to light via that blog of other families whose babies were born with this defect, and their children didn't make it. I read through the one family's blog around the time their baby boy died (which wasn't that long ago--the funeral was only last weekend), and it was simply heartbreaking. To see them go from hopeful to devastated within a couple posts (there was even one simply saying that his heart had stopped) was a stunner. Seeing pictures of the baby drove it home even more. They weren't just words on a page...this was a living, breathing child. He looked so sweet and adorable, with big dark eyes. And now he's gone. Then Matt Hammitt posted on Bowen's blog about a couple who left their same hospital empty-handed after their baby died from a heart defect. He posted about not knowing what to say to them, and the whole thing just weighed heavy on my heart. I can't even fathom what those families are going through. Losing a child, even one that you knew would be born sick, has to be horrific. When you carry a child for nine months, go through the emotional roller coaster that is the conception process and pregnancy, that baby is forever a part of your heart.
When Jacob was in the special care nursery after he was born, I was quite nervous about what would happen to him. While we were pretty sure it was nothing serious or life-threatening, I think the fact that low oxygen levels were part of his problem made me worry even more than I already did about SIDS. While there's no known cause of SIDS, it appears that it's sometimes caused by babies who work themselves into a spot where they're breathing the air they exhaled rather than fresh air, and slowly suffocate themselves. And I guess I just kept thinking that if something like that can happen to healthy babies, maybe Jacob's more prone to it if he's already having low oxygen issues. So, for at least a few moments, I did have to confront those fears of what would happen if we lost him. As I recall, one of my first thoughts was something to the effect of, "All that hard work for nothing." I know that sounds flippant, but perhaps it was all my exhausted brain could conjure up. It was the tail end of nine months of build-up, so much excitement and planning...and to have nothing to show for it would have left such a void, both physically and emotionally. Obviously we would have been devastated. We'd have mourned the fact that we'd never get to know this precious little boy, and mourned the loss of the phase of life we thought we were heading into. We also would have mourned the death of our innocence...of blindly thinking we could walk into the hospital and walk right back out with a healthy baby. Even with our issues I know I'll never take that for granted again. I also wondered how I'd deal with the nursery occupying our spare bedroom. Do you just close the door and forget it's there? Luckily, we never had to find out.
However, I still worry sometimes. You just never know. Jacob is clumsy, doesn't know his own limits, and listens selectively, and I know that one or more of those elements, combined with a moment of horribly perfect timing, could spell disaster. In addition, he's still sick a lot. Ever since his original bout with RSV when he was just a couple months old, he's rarely gone more than a few weeks without some sort of cold symptom, mostly coughing and a runny nose. I'm always worried that there's something more going on that's causing the constant barrage. And every time I hear about some little kid that ended up with cancer or some other random disease, I think about how that kid was probably just like Jacob--generally healthy and happy--right up until their diagnosis. Heck, we could find out a couple months from now that the mole that's getting removed from Jacob's leg is cancerous. You just never know.
That's not to say that I let myself be bogged down by these thoughts. I try to look at them from the other perspective--that I'm so incredibly happy and grateful to have a little boy at all, let alone to have one that is generally healthy and happy. The little baby that looked so tiny and frail hooked up to all those machines in the special care nursery is now an active and crazy two year old. As frustrated as I get with his behavior sometimes, I know that millions of people out there would give their right arm to have my "problems". When I do have those thoughts of the things that could go wrong, I take them with a grain of salt and try to file them away in the back of my mind--to be more careful when he's in a precarious position, to keep an eye out for out-of-the-ordinary changes to his health--and just be grateful that I have this time with him. We are incredibly blessed.
But it doesn't stop my heart from breaking everytime I hear of one of these little babies whose hearts are, quite literally, broken. As a parent I don't know how you could read the stories of these families and not cry with them. Yet so many of them are strong Christians who deal with it better than one might expect...still destroyed, but ultimately not defeated. After all, their babies are healed and with Jesus. They know that their babies' life and death had a purpose, even if they don't know what it is yet, and trust in God's overall plan to bring them through. They're grateful for the time they had. I can only pray that I'd be able to deal with it like that. I'm not sure I could function, let alone be able to find a bright side. But when you're that low, I suppose you just have to collapse into God's arms and let Him carry you through.
Someday down the road I hope to be pregnant again, and I do think about that ultrasound where they check all of the baby's body parts. You can bet I'll be praying for another clean bill of health. You never know beyond that, of course, but you just hope and pray and take it one day at a time. But until then I'll be thinking about all of these babies and their families, both the ones camped out around a hospital bed and the ones who have been left behind. May God bless them all and bring them peace every new day.