She looked perfect to me on the ultrasound. Kicking, rolling, a pearly line of spine, the little profile so like her sisters. After the two-hour echocardiogram, we were sent to a fluorescent lit, little-girl purple consultation room. Note to parents—you don’t ever want to be sent to a consultation room. It’s basically a place for you to cry loud enough for your sobs not to be overheard by other patients. The cardiologist showed us pictures, explained all the medical terms that are beyond my poetry degree, and gave us a name for Kit’s messed up little heart—Tetralogy of Fallot with Pulmonary Atresia (TOF/PA).
In medical terms, her heart has a lot going on that is not so good. The pulmonary valve did not form or does not open, there’s a hole between the pumping chambers, branch pulmonary arteries are very small, and collateral vessels take blood to the lungs.
What this means for Kit is that after birth (an induction at 39 weeks), she’ll be whisked away to the ICU, started on medicine to keep blood flowing to her lungs; then an echocardiogram, and possibly a cardiac catheterization. She’ll possibly need a shunt in her heart, multiple surgeries, and we expect to be in the hospital for nearly a month. Long term, we’re looking at more surgeries and possible developmental delays. There might be a chromosomal disorder that caused it, but we haven’t gotten those results back.
In every single one of these appointments, this long horrible week, I found myself asking that question I’m sure you aren’t supposed to ask—what are her chances? Will she die? It takes all the bravery I have in me to ask that question. They can’t tell me, at least not yet. It all depends. It depends on how her collaterals develop, how she grows, what is really going on in her heart. There’s nothing I can do to help her; I can only pray.
Changing Diana into her pajamas tonight, I ran my hand over her perfect little stomach, touched over her perfect heart. It is a miracle that any baby is born, that any baby’s little heart formed the way it should from a jumble of cells. Bryan reminds me that God is knitting Kit together in my womb, and my initial thought is that he has done a pretty crappy job at it this go around. And the thought of carrying a baby through 39 weeks—they say her chances of making it to delivery are excellent—to give birth to her so that she can die…this is hard. But even if she only lives a week, those months of pregnancy are worth it. Even if only a day, or an hour, or only long enough for me to glimpse her perfectly beautiful face.
I know that there are high chances we won’t get to keep this fifth baby girl, but I want Kit more than I’ve ever wanted anything in my life. I want her to live to run around my house naked during a diaper change and to say Da-Da first instead of Mom and to wear clothes four times passed down from older sisters. I want to hear her laugh. I want to hear her cry.
Please pray for baby Kit—pray that her heart develops, especially the collateral arteries. Pray that she grows, that the doctors and surgeons are wise and skilled. Pray for Bryan and me as we navigate this new ground; pray for us to keep faith, to not give up hope for our little girl. God is knitting her together, and He doesn’t make mistakes. He makes masterpieces.