Imperfectly Perfect

by JoAnna Donkin, as told to Lizzie Heiselt

(listen to JoAnna read the essay here)

A healthy baby has 10 little fingers and 10 little toes, 2 little eyes and one little nose.

But I was not going to get a healthy baby. An ultrasound at 11 weeks hinted that something could be wrong. And after weeks and weeks of awaiting test results, it was confirmed. Something was wrong. Trisomy-13. My baby—Levi—would not live long, if he lived at all. His heart was not right. His brain was too small. His lungs would have cysts. And there was a possibility his face would be malformed as well. There was a 70 percent chance he would be born still.

The specialists tried to prepare me and my husband, Zack, for the worst. He may have only one eye, they said. And I prayed he wouldn’t look like that, that he would look okay. We knew that he wouldn’t be healthy, we knew that he wouldn’t live. But we wanted a good life for him, whatever that life looked like. And of course, we loved him anyway. Knowing that we wouldn’t have much—if any—time with him on the outside, we gave him the fullest life we could while he was still inside my body.

We took him to the zoo and the beach. He went camping and bowling with us. He crossed state lines as he floated in my belly. We took photos of our adventures, documented his existence and our celebration of it.

And in between times, at unexpected moments, I cried. My grief was sporadic, waving over me now and then as I went through my normal routine. I cared for Luke, our 3 year-old-son, supported Zack as he pursued his education, and wondered why this had to happen now, when we were, for the first time in our lives, so far away from family.

In some ways, the situation seemed relatively normal. My body grew just the way it would have if there hadn’t been a diagnosis. No one would have known anything was wrong. The baby moved and kicked just like you might expect a healthy baby to. Our older son was there and involved as much as he could be. He went to the ultrasounds. He talked about his brother.

And while things looked pretty normal on the outside, on the inside, the proportions were off. There was so much water and so little baby. Levi was so small, floating around in what seemed like gallons of amniotic fluid. And instead of talking with Luke about what it would be like when the baby was born, we talked about how his brother was going to live in heaven, with Grandpa.

We prayed of course. And everyone around us, too. People who knew about the diagnosis would come up and tell us they were praying for a miracle. What that miracle would be, or how it would play out, we didn’t know. But we were grateful for the support and love and thoughts that people were sending us.

Because things were different, we handled the pregnancy different. The milestones we celebrated were not the same milestones as most parents. When we realized something was wrong, that the baby might not live at all, we hoped he would make it to 21 weeks. That if he died before he was born, his life would be counted as a stillbirth and not a miscarriage. After that, we hoped he would make it to the age of viability: 26 weeks gestation. Then, that he would get to celebrate Halloween with us—to wear a costume. If Levi made it to his due date with his heart still beating, we might get a belly photo in front of the Christmas tree.

But we knew it wasn’t likely that he would make it that far. In fact, we had no idea what to expect from labor, if it started on its own—which could be any time. By mid-October, when I was 33 weeks pregnant, I was already dilated to a 2 and knew things could get started any time. But because I’d had contractions throughout the pregnancy, I wasn’t sure I’d be able to tell when things were serious. On top of that, the large amount of amniotic fluid I was carrying made it feel like my body could give out anytime.

And it did. A few days before Halloween. We had just checked another milestone off our list—wearing the Halloween costume—when the contractions became noticeably more intense. I had 3 strong ones in 15 minutes and a soak in the bath didn’t slow things down. Levi was coming that night.

I got dressed while Zack called the babysitter. We rushed out to the car. And then time stopped as my water broke. Zack stood in shock for a couple of minutes as the water flowed. And then it stopped and he got a towel for me to sit on while he drove to the hospital. He made the 15 minute drive in 7 minutes. I can still remember the moment I went into transition and need the air conditioning turned off and the heat turned on.

And the heat was on: Zack’s impressive drive time was not fast enough. Levi, still alive and kicking, was coming right then, as he parked the car. Zack ran to get a wheelchair and when he came back, I rolled over and out came the baby’s tiny body, feet first. Zack cheered me on through another push—and caught Levi as his head was born. And from there all he could do was call out to a passerby, “She’s having a baby! Go get a doctor!”

Soon nurses were swarming around us, completely flustered and completely unprepared. No one brought gloves. No one brought a blanket. No one brought scissors to cut the cord. No one even knew where to to take us. So I took charge as I sat in the wheelchair and cradling little Levi, who never cried but was pink and warm and breathing. “We’re going to room nine,” I said. It was the room for families with a diagnosis.

Once there, we closed the door on everyone. It was just the three of us. No nurses, no doctors, no machines or ivs or needles. Just us. And peace. And quiet. And love. Physically, Levi was not perfect. He did not look perfect. His nose was misshapen and misplaced. His eyes never opened. But he had made it. He was breathing. He had given us what was most important. Zack gave him a blessing and we held him to ourselves for just a few minutes.

And then the doctors came in again. They checked Levi’s heart. It had stopped. He was gone, a perfectly imperfect firework who came out with a bang and blazed across our lives.


Little Luke came to see his brother the next day. He loved to look at his brother, and he still loves to tell people about him, and about how he has baby Levi’s blanket.

I’ve spent the months since Levi’s birth making a scrapbook of our adventures together. The day at the beach, the zoo, the camping trip. It is all there. It is nice to have something to do, and something to show people. A photographer came to the hospital and took some pictures. They are precious to me, of course, but I’m not afraid to show them to others. I want people to know that even if he didn’t look perfect, he was still beautiful.

And as time goes by, I can see that everything—everything—happened perfectly. At first I thought: why us? Why did we get this fluke abnormality? It could have happened to anyone. But then I thought again: if it could have happened to anyone why not to us, who had faith that we would see our son again? Who wouldn’t be broken by the loss? We could take it.

But why now? When we were so far from family who could have watched Luke and cooked our meals, and cried with us and held our hands? But I found some peace there as well: we got Levi to ourselves. There was no stress about making sure everyone was there, that everyone had a turn to see and hold him. It was just me and Zack and Levi. He was ours, and ours alone.

What about the miracle that so many people had prayed for? Where was that? Was it in the fact that he beat the odds and was born with a beating heart? Was it that he lived a perfectly quiet and loved life? It did not come in a perfectly formed baby. Or, maybe not yet. But someday. We do believe in miracles. We believe that through Christ, our imperfections can be made perfect. And that means that Levi, even if he wasn’t given a perfect body in this life, will have one someday. Of that I am sure.