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99 Minutes: Part 1: A couple learn their unborn baby won't survive a terrible birth defect. What would they do?

In March 2010, Shannon and Kip Brooks were stunned to learn their unborn daughter, Skylar Tianna, had a fatal birth defect called anencephaly. They had to decide: Should they have an abortion, as many couples would? Or should they plan to give birth?
In March 2010, Shannon and Kip Brooks were stunned to learn their unborn daughter, Skylar Tianna, had a fatal birth defect called anencephaly. They had to decide: Should they have an abortion, as many couples would? Or should they plan to give birth? DAVID T. FOSTER III-dtfoster@cha

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

Like most couples expecting a baby, Shannon and Kip Brooks couldn't wait to show off ultrasound pictures to family and friends.

So in early March, when she was about four months pregnant, they arranged to get a keepsake ultrasound on DVD.

It was the start of a punishing, yet enriching journey that changed their lives and, maybe, created hope for other families.

In a darkened room, ultrasound technician Roxanne Cortes spread clear gel on Shannon's belly. When she touched it with a handheld transducer, the flat-screen TV lit up with a black-and-white image from Shannon's uterus.

Before Shannon and Kip got a good look, Roxanne suddenly made the screen go dark.

You know, she said, I'm seeing a little something that I'm concerned about. So let me go call your doctor.

She left the room and closed the door.

Stunned, Kip stared at the screen, wondering what disturbing thing had just flashed before their eyes. Shannon began to cry.

Just the day before, the couple had moved a crib and changing table into the third bedroom of their home in Denver, N.C., 28 miles northwest of Charlotte. They were waiting to paint until they knew whether they were having a boy or a girl.

Now, in this ultrasound room, they no longer cared about gender. All they wanted was healthy.

Kip couldn't stand it any longer. Maybe five minutes had passed, but it seemed like forever.

Let's go find her, he said.

When he opened the door, they saw Roxanne at her desk, panicked, with a phone at each ear.

On one phone, she was holding for Shannon's obstetrician; on the other, she was holding for the nurse midwife.

Roxanne tried not to let Shannon and Kip see that she was shaking.

On the monitor, she had quickly noticed that everything above the baby's eye sockets was black. The typical white outline of the skull and brain was missing.

Roxanne hung up the phones and told Shannon and Kip that they could expect a call from their midwife later.

She didn't want to tell them much; it wasn't her place. But when they pressed her, she said there was a problem with the top of the baby's head.

If it's what I think it is, it's not good, Roxanne said.

Before they left, Shannon and Kip insisted on returning to the ultrasound room to get another look at their baby. To their untrained eyes, nothing seemed wrong. Roxanne printed a picture from one angle, and Shannon thought it looked like her baby was smiling.

Another angle revealed the gender: a girl.

The diagnosis

On the drive home, Shannon and Kip were numb.

Kip dropped Shannon off at her parents' house and drove to pick up their 2-year-old son, Jadon, from day care. They had all planned to watch the DVD together that evening. Instead, Shannon fell to pieces in her mother's arms.

Before long, Kip got the call from nurse midwife Marcia Ensminger. He could tell she'd been crying. She had delivered Jadon, and they had become good friends.

Marcia said the baby's brain had failed to develop in the early weeks, probably before Shannon even knew she was pregnant. The diagnosis was anencephaly. The cause is unknown, and there is no cure.

Kip had never heard of anencephaly. He could barely pronounce it. He asked how it was spelled.

Marcia explained their choices. They could terminate the pregnancy. Or continue on. The baby might be stillborn. If she lived, it might be for just a few minutes or hours.

The midwife told them to take some time before deciding.

Over the next few days, Shannon and Kip stayed close to each other at home with Jadon. They cried. They prayed.

Doing their own research

The two had met 15 years before, through friends in high school. Shannon Moran went to East Lincoln. Michael "Kip" Brooks went to North Mecklenburg.

They didn't start dating until several years after graduation, when both were attendants in their friends' wedding. Shannon caught the bouquet, Kip the garter belt. Three years later, in 2005, they were married.

They settled in the quiet Hunter's Bluff subdivision, not far from where Shannon grew up. At 30, she worked as a massage therapist and an occupational therapy assistant. Kip, 31, repaired cars at several body shops before he and a friend started Dent Clinic, fixing hail damage to vehicles across the country.

Now, they tapped away on their laptops, searching for an understanding of the strange birth defect that would kill their daughter.

Google searches turned up shocking photos of anencephalic babies with heads like deflated basketballs - no foreheads, no brains, no scalp above the eyes. Shannon and Kip read the words "incompatible with life." They learned that most parents choose abortion.

But they also came across softer images and kinder words.

Kip found a blog called "The story of baby Faith Hope" written by a 24-year-old woman in Canada whose baby also had anencephaly and lived for three months. There were sweet photos of the baby wrapped in a blanket.

Kip identified with this mother's wish to see her child.

Ten years before, when he was 21, his girlfriend got pregnant and wanted to have an abortion. He talked her out of it, promising to be a responsible father. She lost the baby when she was seven months pregnant. Kip didn't find out until weeks later and had always regretted not being able to hold his firstborn son.

An array of tests

With advances in technology and prenatal testing, many parents find themselves facing decisions like the one before Shannon and Kip.

Today, ultrasound scans are performed routinely, as early as six weeks into a pregnancy, to check the health of the fetus, calculate the due date and learn the gender. A more advanced test called amniocentesis is sometimes performed in the second trimester to check for birth defects if the mother is older or high risk.

When serious deformities are detected, some parents choose abortion. National data are not available. But the Greenwood Genetic Center in South Carolina reports that, over the past 18 years, 389 S.C. babies were diagnosed with anencephaly, and 67 percent of their mothers had abortions.

The array of tests and choices has "totally revamped what might be considered the moral responsibility of parents, " said Art Caplan, a University of Pennsylvania medical ethicist.

"Pregnancy has moved from a situation where you had to accept the cards you were dealt ... into responsibility for deciding whether or not you're going to have the child, " Caplan said. "It's very much an individual thing. It depends on your religious values, background and personal ideas about birth."

Considering their options

Shannon and Kip say they didn't have strong political views about abortion. They were surprised at their individual reactions when faced with a real-life tragedy.

Before this, Kip thought he would have surely favored abortion if a child was diagnosed with such a serious birth defect. But in reality, he was not sure at all.

Shannon, who previously thought she would never have agreed to an abortion, now wondered if it might be the right thing, especially because medical professionals seemed to encourage what they call "termination."

In real life, both were talking seriously about giving birth and donating their baby's organs to help another family.

Five days after the diagnosis, they met with specialists at Carolinas Medical Center in Charlotte.

Genetic counselor Stephanie Nix explained that anencephaly occurs in the first 28 days of pregnancy, when the neural tube, which becomes the spinal cord and brain, fails to close.

The condition is fatal and so rare that only 40 babies were diagnosed with anencephaly in North Carolina from 2003 to 2007. Babies with anencephaly are often stillborn, Nix said. If they are born alive, they don't live long. They never gain consciousness and aren't able to see, hear or feel pain, she said.

Shannon and Kip listened closely, wiping tears occasionally, holding hands and sharing reactions with their friend Jan, who had come along for support.

A CMC obstetrician described the couple's choices: If they chose abortion, they would have to decide soon. Shannon was already 19 weeks pregnant. In North Carolina, abortion is illegal after 20 weeks.

The couple asked about organ donation. Their midwife said it was an option. But others had told them it wasn't.

Nix said it wouldn't be possible. Organ donors must be declared "brain dead" and kept on life support until healthy organs can be removed. Babies with anencephaly don't qualify. Although they don't have most of their brains, they still have brain stems, and for that reason, they don't meet the definition of "brain dead."

If you waited for the baby to stop breathing, the organs would have lost oxygen, making them unsuitable for transplant. It just wasn't done.

Decision made

As part of that CMC visit, Shannon had another ultrasound. It was the first time she and Kip heard their baby's heartbeat.

The sound was strong and rhythmic, like waves in the ocean.

And it was all Kip needed.

There was no way he could choose to end her life.

Shannon took a few days longer. Sometimes, she wished it would all be over. That's what some other people seemed to think was best.

But as she spent more time on support websites, she chatted with women who were glad they had carried their babies to term. They didn't have regrets, and Shannon didn't want any either.

She and Kip had already named their daughter - Skylar Tianna.

Now, their decision was clear.

They wanted to meet her.

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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