The Diagnosis

It's been a rough couple of weeks, trying to make plans in preparation for Maren's birth and death. Someone asked why I'm not more positive -- don't I believe that God can work a miracle? Of course I do, but I also believe God has gifted doctors and researchers with the ability to create accurate medical tests. The University of Iowa's test results match the results from the Mayo Clinic, where they sent Maren's amniotic fluid for a second opinion. I'm pretty confident in their diagnosis of Trisomy 13, and Trisomy 13 is not a diagnosis that leaves much room for hope.

The doctors thought something was wrong from our very first appointment. I don't know if it's because I'm forty or if this is just how they do it now, but we had our first ultrasound at twelve weeks, before we even met the OB or heard a heartbeat. When we saw those little arms and legs moving, we were so excited. I think most women who've miscarried feel the same way when they get pregnant again -- a mixture of elation and terror. Seeing our baby alive and well was so reassuring . . . until the ultrasound technician said she needed to step out for a moment to get a doctor. I waited until she quietly closed the door behind her to tell Kevin, "They only bring in a doctor if something is wrong."

A high-risk doctor came in soon after and said the baby's nuchal translucency measurement (the back of the neck) was thicker than it should be. This indicates higher chances of a heart defect or a  chromosomal condition like Down Syndrome. In the span of about three minutes, she used the phrase "interrupt the pregnancy" five times. I finally said, "Abortion is not an option." What I wanted to say but held back was, "If I hear that stupid euphemism for abortion one more time, I'm going to slap you." We declined her offers of tests that would tell us for sure; we didn't feel that the higher risk of miscarriage was worth it. This was our baby and we wanted him or her, even if he or she had a "defect."

I had a good, long cry when we got home. It's a bit of a shock to hear something's wrong with your baby. After a while, though, I felt a peace about the whole situation. I thought about James and how much happiness he brings us. I thought about how much he makes us laugh and how smart he is. I knew that his brother or sister would be like him, even if he or she had Down Syndrome or a heart defect. These were things we could deal with. This would be our daughter or son. All I wanted was for this baby to LIVE. After losing our first baby, I couldn't imagine losing another.

Kevin and I talked more about the possibilities over the next few days. We live in Iowa City, home of one of the best children's hospitals in our state. A heart defect could be operated on. He wouldn't be able to play football someday like his dad would want him to, but he'd happily run around our backyard. Children with Down Syndrome are still beautiful and sweet. She wouldn't be the most popular girl in school, but she'd charm everyone who'd love her. We didn't care what was "wrong" -- we loved our baby already. And besides, how much could doctors tell from pictures taken through layers of my body at twelve weeks of life? As we shared our fears over the next several weeks, we heard several stories from friends or friends of friends about their babies who were predicted to have all kinds of problems that turned out to be nothing. We trusted God and tried not to worry.

Our next ultrasound was at eighteen weeks. Kevin asked the technician right away if she could tell the sex of the baby. She unenthusiastically replied, "Looks like a little girl." With James, we hadn't found out, so this was our first time hearing a gender reveal; I thought they would make it a little more exiting. I didn't realize until later that her lack of enthusiasm was because she and the rest of the medical staff were full of doubt about the baby's chances of survival. The next thing she said was, "Looks like she has a cleft lip." After the initial shock, I actually turned to Kevin, smiled and said, "They can fix that!" I felt like laughing! Here I'd spent six weeks worrying about nothing! Yes, it would be hard to watch our baby suffer through surgeries, but compared to a heart defect or a chromosomal abnormality, this was nothing! I felt such relief! The ultrasound took forever. With James, we'd always been in and out very quickly, but now the technician took picture after picture from every imaginable angle. I tried not to worry too much. I wasn't surprised this time when she said she needed to go get a doctor.

The same high-risk doctor came in . . . along with three others. She started with the cleft lip findings, but she wasn't as optimistic as I was. She said alone, it's not much to worry about, but the ultrasound showed two other concerning issues: her brain wasn't developing as fast as the rest of her, and her umbilical cord only had two blood vessels instead of three. That combination of problems strongly indicated a chromosomal issue. She didn't mention "interrupting the pregnancy" again, but she strongly suggested we get the amniocentesis we had refused earlier. She said it would be helpful in making decisions about our baby's life, which might be very short. She also mentioned we may need to think about whose life was more important, mine or the baby's.

Kevin said we didn't want the amnio; we wanted our baby no matter what. I interpreted what she was saying, though, and said we should; if I were only going to have a short amount of time with my baby when she was born, I needed to know that. I needed a photographer there to get the only pictures we'd ever have of our little girl. Grandparents needed to be ready to get there fast. I needed to mentally and emotionally prepare for death along with life.

The amniocentesis was a few days later on a Tuesday. They said we would get initial results in forty-eight hours or so. Waiting for the results was the worst. I didn't want to get the phone call while I was working, but I was desperate to hear whether or not something was wrong with our baby. We prayed and prayed for Down Syndrome. Of the options, it seemed best. A baby with Down Syndrome would be a living, breathing child we could take home and love. The other options gave less hope. I skimmed over the information about Trisomy 18 and Trisomy 13. They were so rare -- the chances of our baby having one of those abnormalities was so small, it didn't even seem worth dwelling on. Down Syndrome or just a scare -- those were the two possibilities I focused on.

I still hadn't heard from the hospital after school was over on Friday, and I couldn't imagine worrying through the weekend. I called them and left a message to please call me as soon as possible, then went to pick up James. The phone rang as I was driving, and I quickly pulled over onto a side street. The genetic counselor asked if I was in a good place to talk, then cut to the chase: Trisomy 13. "That's the fatal one, isn't it?" I choked out. She said, "It's not compatible with life." She said 50% of babies with Trisomy 13 are stillborn. Those who live only survive a few hours or days after birth. 10% make it to one year. She said someone from the palliative care team would come to our next appointment to help us.

I hung up and sobbed, sitting there in my car on some side street between my school and James's babysitter. I texted Kevin and told him I was coming to get him, then tearfully drove over to his work. The phone rang as I was driving and the caller ID showed it was the hospital. A surge of hope ran through me -- they gave me the wrong results! They're calling back to apologize and tell me everything is fine! Except they weren't. It was the OB, calling to give me her cell number and letting me know I could call her if I had questions over the weekend. I cursed myself for being so optimistic. Pulling up in front of Kevin's office, he quickly jumped in and I choked out the news. We just sat there, crying and holding each other for a while, then drove home. We sat in the darkening living room and cried some more. What else could we do?

That was December 11th. We've had about a month for reality to sink in. Some days it's still so hard to believe. She is so active and kicks like a little soccer player in training. I can't help but think this is her special gift to me, making herself known so often throughout the day. I try not to think that she may one day stop kicking. We are praying for a live birth and a few hours with her . . . to see her blink and hear her coo and feel her fingers wrap around ours. I know there are no guarantees, and I'm not trying to cut any bargains. That is my hope. That is the miracle I'm asking God for. Not a long, healthy, normal life for my little girl, but just for a few hours with her. That alone would be a miracle for us.

This song both makes me cry and gives me comfort. I'm so happy I'm carrying Maren. I love her a little more each day. Please pray with us that we'll get a few hours with her before she goes back to her Father's arms.