Health & Fitness

Aiden: A life to remember

Jacie Brown, 18, looks over at her fiance, Bo Harley, 17, while holding her son, Aiden, moments before he died.
Jacie Brown, 18, looks over at her fiance, Bo Harley, 17, while holding her son, Aiden, moments before he died. The Wichita Eagle

Newborn Aiden had made the rounds, passed from great-aunt to grandpa to friend, and was back in his mother's arms when Steve Friesen came into the delivery room at Newton Medical Center.

"We celebrate and grieve at the same time, don't we?" said Friesen, associate pastor at Grace Community Church in Newton, as he leaned over Jacie Brown's bed to look at the baby.

For weeks, Jacie had been preparing for this moment.

She just hadn't expected it to arrive so quickly.

At 6:13 p.m. on Oct. 28, after more than 24 hours of labor and 13 weeks early, Aiden Edward Harley was born.

He weighed 2 pounds, 1 ounce and was 14 1/2 inches long. He had anencephaly, a fatal disorder diagnosed about 10 weeks before his birth.

Fifty-one minutes after his birth, he died.

But as Friesen said at Aiden's funeral a few days later, "Fifty-one minutes is not the end of the story."

* *

"What you expect isn't always what you get," Jacie said less than a week before Aiden's birth.

She hadn't expected to get pregnant as a high school senior. She hadn't expected to learn her baby had a fatal condition. And she hadn't expected him to make such a profound impact.

She was just a high school student, going about life in Blackwell, Okla., just south of the Kansas border.

Bo Harley lived there, too. He used to flirt with Jacie as she worked the baseball concession stand in summers. She always put him off because he was younger.

But eventually, they started dating — their first date was Nov. 27, 2007.

The week after Jacie graduated, she found out she was pregnant, due Jan. 23.

"I was shocked. Very shocked," she said.

Bo said, "I was just in awe when we found out."

About 14 weeks into her pregnancy, Jacie underwent standard blood tests. Her obstetrician said she'd be in touch. A few days later, the doctor called.

* *

"One of the results showed irregular. She said it could either be something wrong with the test and we could do another one, or that it could be Anencephaly (the baby has no skull, and just a brain stem) or Spinal Bifida."

—Jacie's online journal

* *

Jacie has epilepsy; she had her first seizure when she was about 13. Tegretol, the medication she took to control her seizures, is a risk factor for neural tube defects. A daily dose of folic acid during child-bearing years helps reduce the risk, and Jacie takes it now.

Anencephaly and spina bifida are the two most common neural tube defects. With spina bifida, the spinal cord and its coverings don't completely develop. With anencephaly, a large part of the brain and skull are missing. Spina bifida can be treated, and most children will survive into adulthood. There is no cure for anencephaly. Babies who aren't stillborn die shortly after birth.

Sonograms confirmed that Aiden had anencephaly.

They also showed Jacie was carrying a boy. She named him Aiden Edward Harley — Aiden was a name she'd always liked, and all the males in Bo's family share the middle name Edward.

Her obstetrician and her neurologist wanted to make sure Jacie understood the diagnosis and her options, and both mentioned terminating the pregnancy as one of them.

"Termination's never crossed my mind," Jacie said before Aiden's birth.

Jacie said her faith is strong, and she knew God would forgive her if she went that route. But she didn't know whether she could forgive herself.

Besides, "I would rather meet him than wonder 'what if'.... What if he develops and something minor's just wrong?"

She concedes now that, until Aiden's birth, she had a bit of denial going on.

* *

"In the back of my mind i have a strange feeling that he somehow will make it.... But the doctors just reassure me that Aiden wont.... And i just cant accept that, and i probably never will til hes gone."

—Jacie's journal

* *

As a pregnant 18-year-old with no resources, Jacie wasn't sure where to turn. Her epilepsy keeps her from working; she is applying for disability.

Her mother and stepfather were transferred to Newton in July 2008; Jacie had moved there after graduating.

A neighbor looking for a place to volunteer ran across Choices Medical Clinic in Wichita and mentioned it as a possible resource.

Choices is a pregnancy crisis center at 538 S. Bleckley, just south of abortion provider George Tiller's now-closed clinic. Choices Medical Clinic offers pregnancy tests, sonograms, adoption referrals and other pregnancy services.

Since opening 10 years ago, it has offered a lesser-known service as well: a perinatal hospice, for those who know their babies likely will die before or shortly after birth.

Fifty-three women have used Choices' perinatal hospice. In its early years, it was one of only a few perinatal hospices in the country. Today, 27 states have at least one, according to perinatalhospice.org. The one at Choices is still the only one in Kansas.

On Sept. 9, Jacie sent an e-mail to Choices Medical Clinic, with "Hey" and a smiley face in the subject line.

"Hi, my name is Jacie," she wrote. "I was wondering what kind of services you offer."

* *

"Its amazing what such a scary diagnosis for your first child can do to you. It wakes you up and makes you realize don't take people for granted, or anything/anyone around you for that matter."

—Jacie's journal

* *

With news of her pregnancy and Aiden's prognosis, some of Jacie's friends drifted away.

Danielle Hayworth of Wichita empathizes. She was pregnant with twins in 2005; one had anencephaly.

"You get really isolated because a lot of people don't know how to handle it," she said. "The one thing they do is to back off."

Hayworth also turned to the Choices perinatal hospice. It helped her with hospital arrangements, "with what I wanted during delivery.... They were just really supportive."

Her baby lived 43 hours. "They were there the whole time," she said.

Everyone's around for a funeral, she said. But afterward, they go away. Choices didn't.

"Just because he died didn't mean it was over. I could come in any time, to vent, to talk."

Even today, Hayworth has hard days and calls the volunteer who helped her through baby Lee's birth and death.

* *

"Im just waiting for thursday to come around so I can see Bo again because he is going to my ultrasound appt at the Choices office in Wichita on Friday. Im looking forward to seeing our little man, and so is Bo."

—Jacie's journal

* *

When Jacie sent her e-mail to Choices, "I didn't really know what perinatal hospice meant," she said.

A few days later, she met Denise Douthit, a perinatal hospice volunteer at Choices.

One service the hospice offers is sonograms — as many as a client wants, as often as she wants them.

"That may be the only time they see them alive," Douthit said.

Jacie had a sonogram almost weekly, so she could see her son in addition to feeling his kicks and somersaults.

Douthit and Jacie met often and talked and e-mailed even more often.

Jacie and her mother are close, and her mother has been supportive every step of the way. But "she didn't really know how to comfort me," Jacie said.

Douthit said, "And her mom's grieving. She's lost a grandson."

Together, Douthit and Jacie visited Newton Medical Center and started work on a birth plan. They talked about funeral and cemetery arrangements, about birth announcements and keepsakes.

Douthit, a labor and delivery nurse for five years, volunteers because a friend of hers lost twins before birth years ago. The woman has no keepsakes from her babies and still sometimes has difficulties dealing with the emotions of the experience.

* *

"My mom, (sister) Chloe, and I went to the Newton Hospital.... We discussed some of what I had in mind for my birth plan... and what Choices would be doing while they were there. It was comforting knowing that everything is kind of getting prepared."

—Jacie's journal

* *

No one had any reason to think that Jacie would go into labor early. But on Oct. 27, her back started hurting. Her mother finally took her to Newton Medical Center's emergency room, where she found out she was in labor.

Jacie was admitted. She called Bo, who found a ride from Blackwell. Douthit and other volunteers from Choices arrived, along with Kim Stahly, a Newton photographer and volunteer for the Now I Lay Me Down to Sleep Foundation, which provides keepsake photos in cases such as Jacie's.

Jacie was nervous. She hadn't had any birthing classes and wasn't sure what to expect.

About 25 hours after she was admitted, Aiden was born. Bo, Jacie's mother and Douthit were in the room, too.

The nurses and doctor checked Aiden over, weighed him, measured him, swaddled him in a blanket.

When he was placed in Jacie's arms, Aiden took her finger and stared at her.

Jacie wanted to share Aiden with those who'd shown up, wanted them to have a chance "to love on him." Soon, the room was full, and Aiden's relatives and friends took turns holding the tiny baby.

He made it back to Jacie and Bo, seated beside her on the edge of the bed. They looked at each other, looked at their baby, adoring his tiny cheeks, his long fingers and toes. Jacie bent down to kiss Aiden, again and again.

A nurse came in, put her stethoscope to the tiny chest and whispered something.

"She just looked at me and just told us he passed away," Jacie remembered.

* *

"Bo found God today. And I think that is one of the main reasons Aiden was born. To help his parents realize there IS a God and he is oh so amazing. I am truly touched by today and not a day will go by from now on I wont think of this day."

—Jacie's journal

* *

Five days after his family and friends welcomed Aiden into the world, they gathered for his funeral at Grace Community Church. The arrangements were handled by Agape' Care Cradle in Wichita, a nonprofit infant mortuary. Douthit had called before Aiden's birth.

Before the service, Jacie said she felt a little "tweaking," as if on the verge of a seizure, even though she'd taken her medication. She wasn't sure she'd be able to read what she'd written for Aiden.

Three of Bo's football teammates, a scattering of other students from Blackwell, Douthit and other staff members from Choices were among the mourners.

Children, Pastor Friesen told them, "allow us to connect with God." Through Aiden's life, "we're learning to love each other more deeply."

Jacie stood to read her letter. She and Bo asked three things of Aiden, she said:

"Watch me and your daddy every day.

"Know that we love you."

She couldn't finish; Friesen took over. Be a good brother to those to come later, he read. "They will know of you, and you will be mentioned in every prayer."

Afterward, Aiden was laid to rest in Newton's Greenwood Cemetery, in a section reserved for babies. Jacie is saving to buy a permanent marker, though with no job, it's a challenge.

* *

"To all the staff at Choices-I cant express how greatful I am for each and every one of you, and trying to make this experience the best it can be for Aiden, me, Bo and our families.... All of you are blessed with gifts from God and I see and feel them everytime I am in your office."

—Jacie's journal

* *

Jacie treasures two pieces of jewelry. One is the engagement ring Bo gave her. The other is a tiny ring that Agape' Care placed on Aiden's finger. It's on a chain around Jacie's neck now.

Since Aiden's funeral, Jacie and the Choices volunteers have stayed in touch, in person and by phone and e-mail. Jacie and Douthit are starting a book study.

The Choices volunteers will continue to work with Jacie as long as she wants.

"I lost some friends out of this," Jacie said, "but I gained some new ones, too."

Jacie visits Aiden's gravesite regularly. She writes in her online journal almost daily. Sometimes the entries are filled with grief or anger, sometimes there's humor, sometimes there's just the daily musings of a young woman. She looks to the future — she'd like to go to college to become a sonography technician, and Bo wants to join the military when he finishes school. They plan to marry someday.

They both want more children. And they will never forget their tiny Aiden, who lived only 51 minutes.

* *

"Today Mr. Aiden is three weeks old and I'm so proud how far he, and me and Bo have come since that day, well actually since we found out I was pregnant with Aiden. We have all grown in our own ways, and Aiden was blessed enough to grow wings in the process."

—Jacie's journal

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