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99 Minutes: Part 3: Making peace with sadness; the Brookses are living in limbo; wanting to talk, dreading questions

(This is the third of a four-part series that was published in the Charlotte Observer from Nov. 14-17, 2010.)

At the obstetrician's office in June, Shannon Brooks settled into a sofa and smiled at the man across the waiting room, someone she knew from high school.

"How far along are you?" he asked.

"Our due date is Aug. 4, " she said.

"A boy or a girl?"

"It's a girl, " she said.

She didn't tell him that her baby was going to die.

It's not that she was keeping it secret. In fact, she and her husband Kip wrote about it on Facebook all the time. But every chance encounter turned into a calculation about how much to reveal.

Who needed to know that Skylar would be born without most of her brain, with a birth defect called anencephaly?

It happened over and over.

In the baby store one day, Shannon and Kip picked out several outfits for Skylar to wear in what would be a very short life. They knew she'd be small, so they chose the "newborn" size.

A clerk cautioned that "newborn" fits babies up to 8 pounds only.

"I'd hate for you to go too small and her not be able to wear them for very long, " the clerk said.

"She's gonna be real small, " Shannon said.

"Are you sure?" asked the clerk, who couldn't help but notice Shannon's ample belly.

Shannon paused, a little perturbed. "We really need something small, " she said softly.

Sometimes Shannon and Kip were upset by things people said. But they were also hurt if people avoided the subject altogether.

When out-of-town relatives visited, Shannon noticed that hardly anyone wanted to touch her belly as they had when she was pregnant with their son Jadon in 2007.

Speaking out for Skylar

At their get-togethers, people talked about the weather, their jobs, anything but Skylar.

Shannon cried about it privately. But in public, she made a point of speaking Skylar's name as often as she could.

She talked about the multiple medical procedures she had already endured, with long needles to remove extra amniotic fluid from her uterus. They were intended to make Shannon more comfortable and increase the chances that Skylar would be born alive.

Shannon also talked about Skylar with 2-year-old Jadon.

"Who's in there?" she would ask, pointing to her belly.

"Baby Skylar, " said the blond, blue-eyed toddler.

Shannon wanted him to know that Skylar was real and that he was her big brother.

Not knowing what to say

As Shannon and Kip were learning, when it comes to death, few people know what to say.

"Death is not something we're good at talking about in general, " said Pam Mange, manager of Kids Path, the pediatric program of Hospice & Palliative Care Charlotte Region.

"And when you start talking about the death of a baby, you find even fewer people who are willing to talk about it, " she said. "When people want someone to 'get over it, ' it is often because they feel helpless to see people grieving."

By wanting friends and relatives to acknowledge Skylar, Shannon and Kip were no different from others who grieve loved ones, Mange said.

"What they're trying to do is to have people accept that they are having a baby even though that baby may not live ... Everyone wants to know that their loved one was valued."

An 'angel shower' of love

As parents, Shannon and Kip wanted people to acknowledge - and celebrate - Skylar's existence.

With that in mind, they posted a Facebook invitation to an "angel shower" - a twist on the typical baby shower.

Instead of gifts, they asked for coins and bills stuffed in baby bottles, a donation for Be Not Afraid, the group of volunteers who support parents who choose to continue their pregnancies even when babies are going to die.

Guests were quiet at first, not sure what to say or how to act. They admired the pink balloons and sheet cake for "A New Little Princess." Then Shannon announced she wanted everyone to write notes to Skylar - on her belly.

She lifted her blouse and bared her midsection before each guest.

There was nervous laughter, but everyone played along.

Shannon felt Skylar kick as someone drew a butterfly in pink and green washable ink.

Markers tickled as they spelled out wishes: Faith & Love. We love you.

People were warming up to the idea of Skylar's birth.

The due date approaches

In early August, Shannon and Kip returned to Lake Norman 3D Imaging.

Five months before, ultrasound technician Roxanne Cortes had discovered Skylar's birth defect.

It was the worst day of their lives.

Now, as they approached Skylar's birth, they were making peace with their sadness.

In the exam room, they watched ultrasound images of Skylar. Roxanne pointed to her round cheeks and belly, arms and feet. "There's her hands. She likes to show us her little hands."

This room, once so frightening, now seemed peaceful. "That's the most time we've spent with her, " Kip said.

Soon, they hoped to hold her, not just watch her on a screen.

They were one day short of Skylar's due date. But the baby showed no signs of coming.

Shannon and Kip would have to decide when to induce labor.

They knew they would be choosing not only Skylar's birthday, but probably the day of her death.

The series

Today: Shannon and Kip Brooks face a devastating diagnosis and a tough decision.

Monday: Resistance and support from unusual places.

Tuesday: Finding acceptance despite sadness.

Wednesday: Meeting Skylar - and saying goodbye.

Resources

Be Not Afraid: www.benotafraid.net/nc; Tracy Winsor, 704-543-4780; Sandy Buck, 704-948-4587.

Now I Lay Me Down to Sleep: www.nowilaymedowntosleep.org.

March of Dimes: www.marchofdimes.com; 914-997-4488; 888-MODIMES (663-4637).

N.C. Folic Acid Campaign: www.getfolic.com.

Birth Defect Research for Children, Inc.: www.birthdefects.org; 407-566-8304.

Duke University Medical Center, Center for Human Genetics: Heidi Cope, anencephaly study coordinator, heidi.cope@duke.edu, 919-684-0655.

Baby Faith Hope: http://babyfaithhope.blogspot.com.

Amy Kuebelbeck: www.waitingwithgabriel.com.

LifeShare of the Carolinas: 800-932-GIVE (4483); www.lifesharecarolinas.org.

Hospice & Palliative Care Charlotte Region: www.hpccr.org.

How we did this series

The narrative is based on interviews and visits with Shannon and Kip Brooks, friends and family from June to November. Health reporter Karen Garloch and photographer David T. Foster III were present at many of the events described in the stories. Other sources included doctors, nurses and other medical authorities.

Story behind the story

Reporter Karen Garloch heard about Shannon and Kip Brooks through a colleague who attends church with Shannon's parents in Denver, N.C. "When we met, I was struck by their bravery and the power of their story, " Garloch said. "I wondered if I would have been as strong as they were if I had faced such a tragedy when I was their age."

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