Finding Out: Dandy-Walker Syndrome

Posted on Posted in Agenesis of the Corpus Callosum, Other Diagnoses, Stories, Termination after 24 weeks

By Kate C.

Weeping angel
After all, it doesn’t matter to me whether my baby’s brain is completely normal, it matters to me whether she’ll be healthy, functional, capable of experiencing the whole range of human emotions…

Originally titled “Dandy Walker Syndrome” and published at Makin’ Babies – Adventures in Family Building. Republished by permission.

I went for a reassurance ultrasound yesterday. It was not reassuring.

At my fetal survey, much earlier in my pregnancy, they had a very hard time imaging the baby’s brain, and there was a ghost of a brain abnormality on the resulting images. It showed up in some, not in others. I was sent to a bigger, higher-risk hospital for a second opinion where they also had trouble getting their images but saw no sign of any abnormalities and declared my baby healthy and normal.

Yesterday, the abnormalities were back. And they were obvious. So obvious I could see them. A big, black spot of fluid in the brain, underdevelopment of the cerebellum, and no sign of connection between the two hemispheres.

Two high-risk OBs came in to tell me the news. It washed over me, but I didn’t know what to make of it. After all, it doesn’t matter to me whether my baby’s brain is completely normal, it matters to me whether she’ll be healthy, functional, capable of experiencing the whole range of human emotions, and independent enough that she won’t so draw on my energy that I’m left with nothing for anybody else. Doctors don’t tell you that kind of thing.

Instead, they tell you the problems, specifically and technically. Then they tell you your options. At 35 weeks, there aren’t many left, but they mentioned adoption for special needs kids and also the possibility of third trimester abortion out of state. Depending on the severity, of course, which we know nothing about at this time. I’m glad that they tell me this, but the very thought of it turns my stomach. It’s just too late, or it’s just too dire. They asked me if I’m a drug addict, an alcoholic. Then there’s a list of other choices and recommendations, complete with risks: amniocentesis, MRI, antibody blood workup.

“And you have to deliver here. You have to transfer your care right now. No birth center. We want your baby in the NICU.”

For some reason, this is where I lost it.

“Are babies with these symptoms ever normal?” I squeaked

“Yes. Sometimes.”

But it is clear that the answer is not all of the time, or even most of the time.

They left me in the exam room and I called Hub. It was a terrible call to receive at work. I was incomprehensible, a pile of tears and chokes. Hub hadn’t come to the ultrasound because we thought it would be an easy, happy appointment. “Where are you?” he asked. “I’m leaving now.”

I spent most of the day in a little office so that I wouldn’t have to sit in the waiting room with the happy expectant parents. Maybe for my privacy, maybe so that I wouldn’t terrify them. The secretary hugged me a lot and brought me water. The technician told me, “It’s always the nice ones!” All manner of personnel pretended not to know the situation, but all of them did.

I accepted the amniocentesis. It hurt, but there were no complications, and Hub was there to hold my hand.

I was given an entire day’s worth of appointments and meetings to attend on Friday. The MRI will tell us more and the neonatologist will reckon a guess at a tighter range of expectations for our child.

***

Hub and I picked up Elsie together. We walked to clear our heads, taking the empty stroller with us. “People think we’re practicing.” I joked. You always get weird sideways glances, walking around with an empty stroller.

Our daycare ladies wanted to know what was up. After all, Elsie was  supposed to be there for only a couple of hours, but she stayed all day.

“There’s a problem, with the baby’s brain.” I told them.

C translated for M, who immediately began telling me, in Spanish and pantomime, “No! There is nothing wrong with your baby! You are healthy. He (Hub) is healthy. She (Elsie) is healthy. You see this one?” She points to a little boy running around the place. “They told his mother the same thing. Said that there was a problem with his brain here,” pointing to the back of her head. The cerebellum. “Mama was so depressed. Crying every time. She pray! She pray to God. And look!”

The child looks fine.

“Perfectly normal.”

***

Hub and I collapsed into bed last night, completely exhausted — I, from falling apart, he, from holding it together. I slept three hours before waking from my apnea. I spent the rest of the night listening to the time go by. Freight trains travel between 1:00 and 3:00 in the morning, then that first bird starts singing. By 4:00, others have joined in, and I’ve finally given up on sleep. I go downstairs to knit my worries into a tiny blue-green sweater. Dawn marks 5:00, when Hub comes to gather me up in bed in his arms because I’m crying again.

My mind is racing, still racing. The best moments are those when I can just live in the moment, breath by breath. The worst are all the others. These thoughts, they’re not brave and they’re not strong and they’re not noble. I’m terrified and self-pitying. I don’t think I’m cut out for a special needs child. I don’t want to be a saint, I want to be a normal, mortal mom with normal, healthy kids and normal limitations. Every time I think I’ve cried myself out, I start sobbing again.

There is one thing that this goddamn medical-industrial complex has taught me, though, and that’s to wait for the next test. Tomorrow. Tomorrow.

 

Editors Note: The story of Kate C’s decision and termination is continued in the post The Clearest Choice.

photo credit: Ron Clifton via photopin cc