a matter of the heart

Pregnant women (and I speak for all of us here) can't help but worry that their children will turn out okay. We hear enough about Downs Syndrome and Cystic Fibrosis and Fetal Alcohol Syndrome to freak anyone out. I worried about the careless 2 doses of NyQuil I took after conception but before my knowledge of it. When my dad joked that he would be happy with a "grandson, granddaughter or friendly alien," I laughed, but had nightmares about giving birth to something that looked like an extra terrestrial. You worry about the missing toes, the cleft palate, the hair lip, the deafness, the blindness, the deformation. Once baby is born and you count the fingers and note the proper placement of her nose, you breathe a sigh of relief. All that worrying for naught, you think.



So, on day 2 in the hospital, when the pediatrician came in to check my perfect daughter, I was confident. Even after she told me she heard a heart murmur, I didn't despair. "Lots of babies are born with murmurs that go away in a day or so, so I'll be back to check her tomorrow," she'd said.



Dave listened to her heart, heard the murmur, but didn't seem worked up, so I calmly waited for the next check up.



On day 3, the pediatrician still heard the murmur, so she ordered an echocardiogram. The technician came in with a big machine and ran a wand over my darling as she lay sleeping on my chest. Dave was watching intently; he had some training in these mysterious images, after all. I just watched my daughter and occasionally glanced at the screen or my husband to see if I could make sense of anything. I couldn't.

The technician, knowing Dave was a doctor, said, "I can't really tell you what I'm seeing. You'll have to wait until the doc looks at the images," but he proceeded to point out major landmarks anyway. Words were tossed around between the tech and my husband that made little sense to me, but piqued just enough worry to raise my own heart rate. When the procedure was over, I asked my husband what he knew.



"Nothing really," he said. "It could be *insert gibberish words* and it could not be, we'll have to wait and see what the doctor says." I know now, he was protecting me. He knew that our little baby had a hole in her heart.



Those gibberish words can now be defined as "tetralogy of Fallot." For a while, I thought they were saying "tetralogy of flow" which made sense since we're talking about the heart. But no, Fallot is the guy who defined the condition. Tetralogy refers to 4 key anatomical features of the condition, but my understanding is that only 2 of them matter. 1. A hole between the left and right ventricles. 2. A narrowing of the pulmonary valve. In a nutshell, oxygenated blood can mix with deoxygenated blood, meaning that not enough oxygen gets taken throughout the system. In an even smaller nutshell, this means babies can turn blue.



Our baby is not blue. She's not even purplish. She's pink and rosy and beautiful. She's currently considered "mildly affected." She has the same oxygen levels in her blood as any other baby. You look at her and you have no idea that she has a congenital heart defect.



In the end, she's going to need surgery. Open heart surgery. Probably before she's 6 months old. Right now, we go to the cardiologist every 3 weeks to check her stats. We watch for "blue spells." We wait and let her grow and get strong. We enjoy her and forget that there is anything wrong. Truly, as far as heart conditions go, this is a best-case scenario. She's otherwise perfectly healthy. We discovered the condition via the murmur- not a "blue spell" (can you imagine how scary THAT would be if you weren't expecting it?). We have the means and resources and attitude necessary to get her the required care. We have good health insurance. Once she has the surgery, she'll be fine. Follow up with the cardiologist throughout life- but no limitation to her activities. Shaun White- the Olympic snowboarder- had this condition. So AJ can be an Olympian if she wants to.

Still...open-heart surgery on a baby. My baby. You can imagine what it's taken for me to come to terms with this. But I have. I had to accept a few truths to get there. First, this has nothing to do with her being a month early. Second, there is no known cause of this. It is congenital, but not hereditary. Dave and I are no more likely the have another child with this condition than any other couple. Third, this doesn't define her. She is beautiful and healthy. We'll fix this, but until then, she's just a normal (well...exceptionally adorable and smart and perfect) baby.

Finally, I've accepted that this is not my fault. Of course, I could go into how I've wracked my brain to come up with something I used or did or ate that could've caused this. If I was a religious person, I might see this as God's punishment to Dave and I for having premarital sex. The most spiritual I'm going to get about it is this: Balance. I have a fairly charmed life. This is a challenge, an obstacle, but I can handle it. We can handle it. AJ won't even remember it.

Dave summed it up best. We were still in the hospital. I'd been crying as I realized what had to happen to fix my baby's heart. "Now that I've met her, I wouldn't exchange her for a baby without this problem." I said. "I mean, she's pretty perfect, except for this hole in her heart."

Dave looked at her, then looked at me. "She's pretty perfect with it."