Julia O'Malley: When birth means saying goodbye

Stacey Maddox is 32 weeks pregnant. Her belly is round enough that strangers ask her when she is due. But her pregnancy isn't like most pregnancies. She isn't decorating a nursery or registering for a baby shower. Each week that brings her closer to the moment she will get to hold her daughter also brings her closer to moment when she will have to say goodbye to her child forever.

Her baby, who has a neural tube defect called anencephaly, is not expected to live long after she is born. Maddox, 30, and her husband, John Hetzel, 31, have known that she had the fatal condition linked to a folic acid deficiency since Maddox was 17 weeks pregnant. She had just graduated from medical school and was preparing to start her residency in Virginia. She and her husband, who is in the Air Force, were living in different states. They could have terminated the pregnancy when they got the news. That's was Maddox's initial impulse.

Then she changed her mind.

She wrote me a few weeks ago because, she said, she wanted women to know how important it is to take folic acid before they become pregnant. She also wanted other women who found themselves in her position not to feel alone. So many people have lost a child during pregnancy, she said.

In her medical training, she told me, she once saw a couple in their 90s and she asked them how many children they had. The woman said four. The man reminded her that it was five. They'd lost one, he said.

"(The woman) said, 'Well, we don't talk about that," Maddox said.

But then they told her about what happened. Both of them were in tears all those years later.

Many people carry that quiet loss, she said. Experiencing it herself makes her more sensitive to how common it is.

Maddox got the call in mid-summer that a prenatal test indicated her baby had a high chance of having a neural tube defect. Maddox knew from medical school that these defects happened early in pregnancy and affected the development of the brain and spine. After the test results came back, she went in for an ultrasound. She watched the white image of her baby on the black screen. The tech couldn't get a good picture of the baby's head. And then, finally, the baby's face came into view. It didn't look like a normal baby's face. Maddox knew before the doctor told her. The baby had no brain. She would never live on her own. Anencephaly.

Maddox couldn't think clearly. She'd already felt her daughter kick. She'd chosen a name, "Denali." She began to cry. Her mother was with her for the ultrasound.

"I told my mom, I said, 'She's a monster.' I said, 'My baby's a monster,'"

Maddox didn't want to be pregnant a moment longer.

"I'm, like, get her out of me right now. I can't do this."

Terminating a pregnancy at 17 weeks isn't easy to do. In some states it's even illegal. She couldn't get an appointment for a week. She made that appointment, she waited and she thought.

Maddox was raised in a Baptist family and her husband is Catholic, but she doesn't consider herself religious. Politically, she's pro-choice. She doesn't think the government should get between a woman and her doctor. That said, she'd once tried to talk a friend out of having an abortion.

"The baby," she told herself and her husband, "is just on life support."

Maddox and her husband talked to a priest, who told them that whatever they decided to do, he would support them. They told him they planned to end the pregnancy. He said that he would baptize the child.

A friend sent her a video about something called prenatal hospice. In the video, a woman carried her baby to term even though she knew the baby was going to die at birth. The baby was born by cesarean-section and the woman was able to hold it.

"I was like, 'Wait a minute, I kind of want that,'" she said. "I just wanted to hold my baby."

A doctor told her that it was an option for her to carry her baby. A family friend called, a religious man.

"You are not God," he told her. "This is not your decision."

That made sense to her, she said. She'd joined anencephaly support groups online. She knew women who chose not to go through with their pregnancies. She totally understood where they were coming from. But she didn't want to go that way. She wanted to let her pregnancy continue.

"I felt like it was the right thing," she said.

She decided to take a year off from her residency program and move to Alaska to be with her husband. Her only goal now is to appreciate the experience of being pregnant, she said. Close friends and family have sent presents for Denali, clothes and blankets, even though it's not clear if she'll ever use them.

Maddox and her husband watch the baby move inside her belly. They feel her kick. They talk to her. They play her music. This week, Maddox told me, it was Guns N' Roses.

All children teach their parents lessons. Her daughter has taught her to be patient, she said. Everyone is going to die, she told me, just in her daughter's case, they have a better idea about when.

"It doesn't change the fact that I need to enjoy her every single day and just be with her," she said. "Because this is all we have, we only have this present moment."

Julia O'Malley writes a regular column. Reach her by phone at 257-4591, email her at jomalley@adn.com, follow her on Facebook or Twitter: @adn_jomalley.



Julia O'Malley

Anchorage-based Julia O'Malley is a former ADN reporter, columnist and editor. She received a James Beard national food writing award in 2018, and a collection of her work, "The Whale and the Cupcake: Stories of Subsistence, Longing, and Community in Alaska," was published in 2019.