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99 Minutes: Part 4: Saying 'hello' and 'goodbye;' Skylar's life, however brief, transforms organ donation system

DAVID T. FOSTER III-dtfoster@cha

(This is the last of four parts in a series published in the Charlotte Observer from Nov. 14-17, 2010.)

It was time to push.

But Shannon Brooks wasn't ready to let go of the baby she had carried for nine months.

Relaxed and pain-free thanks to an epidural anesthetic, Shannon wanted to snuggle a little longer with her husband, Kip, in the hospital bed at Lake Norman Regional Medical Center. As long as they stayed there, side-by-side, they could protect their unborn daughter, Skylar, from a certain death.

This was the most peaceful labor nurse midwife Marcia Ensminger had ever seen. And that was surprising, given what was about to take place.

In five years of practice, the midwife had brought hundreds of babies into the world. But this would be only the second time she had delivered one with anencephaly.

Five months earlier, Marcia had been the one who explained the diagnosis to Shannon and Kip. Their baby's brain had failed to develop early in the pregnancy.

When the couple chose not to have an abortion, Marcia and obstetrician Susan Roque supported them all the way.

At first, it was uncertain if Shannon would reach full term. But here she was, on Aug. 7, three days after her due date.

That morning, nurses had given Shannon drugs to induce labor and numb her pain.

It wouldn't be long.

A mix of emotions

The atmosphere on the OB floor was filled with anxiety, sadness and anticipation.

About 20 friends and relatives, including Shannon's mother and stepfather, Kimberley and Raymond Miller, and Kip's mother, Peggy Brooks, had gathered to await the birth. They knew she might be stillborn. Even if she lived, they knew it wouldn't be for long.

No one knew quite what to expect.

By 3:30 p.m., Marcia confided to Shannon's mother and a few friends that she'd have to deliver the baby soon, even if Shannon wasn't ready.

Cindy Jordan, an ordained Baptist minister who would be the baby's godmother, agreed to help things along.

She stood quietly with Shannon and Kip, then placed her hand on his shoulder, gently stroked Shannon's belly and offered to say a prayer "before you get started."

They held hands and bowed their heads: "Thank you for Skylar and her journey here, " Cindy said. "Be with (Shannon and Kip) now as the time of delivery comes near."

Kip kissed Shannon sweetly, as if they had all the time in the world.

Then Marcia walked in, and Shannon's eyes filled with tears.

A nurse closed the door.

Skylar arrives: 5 lbs., 15 oz.

In the hallway, grandparents, godparents and others held hands in a circle and prayed. They assumed it would be a long labor, but Marcia returned with news in less than 30 minutes.

Skylar was born at 4:21 p.m. She weighed 5 pounds, 15 ounces. She was having trouble breathing, but she was alive.

"She's taking little gasps here and there, " Marcia said. "She's looking at her mom and dad."

Marcia hugged the grandparents, and they all hugged each other.

What Marcia didn't say was that most of Skylar's brain and skull were missing. From above her eyes to the back of her head, there was emptiness.

Skylar didn't cry. She blinked only a few times.

But the birth was as normal as Marcia could make it. She laid Skylar on her mommy's chest. And she let daddy cut the umbilical cord.

Together, Shannon and Kip bathed their baby and dressed her in one of the outfits they'd bought just a week before - a white knit gown with tiny red roses and a matching hat.

They wrapped her in a soft blanket and asked to have 2-year-old Jadon brought to the room to meet his baby sister.

'Happy birthday dear Skylar'

Shannon looked peaceful and strong, sitting up in bed, cradling the baby in her arms. Kip sat beside them. Both were smiling, as proud as any new parents.

Slowly, visitors came near for hugs, congratulations and peeks at the baby.

By this time, Skylar's skin was a deep purple. She wasn't getting enough oxygen.

Her big blue eyes were wide open. She didn't stretch her arms and legs as babies usually do.

To visitors just entering the room, it was unclear if she was even alive.

But if anyone was shocked, they didn't show it.

In the awed silence, they took their cues from Shannon and Kip, who gazed lovingly at their baby girl.

Tracy Winsor, who had lost two infants of her own and befriended this couple in recent months, had seen babies with anencephaly and knew how scary it could be. She felt Shannon and Kip had prepared themselves for Skylar's unusual appearance and would love her no matter what.

"Congratulations, " Tracy said. "You did a good job."

She led the group in song:

"Happy birthday to you... Happy birthday dear Skylar..."

Shannon and Kip kissed. He stroked Skylar's soft cheek as the trace of a tear shone on his own.

Cindy, the godmother and minister, stepped up for the baptism, along with Shannon's stepbrother and Skylar's godfather, Robb Miller. With water on her fingers, she touched Skylar's face. "I baptize you in the name of the Father and the Son and the Holy Ghost."

At 6 p.m., when the midwife came back to check, the baby's heartbeat was gone. Skylar had lived for 99 minutes.

Shannon let herself cry.

Kip whispered to the room: "Can we get a minute?"

'She's pretty'

An hour later, they invited everyone back in. They were smiling again as they motioned for their mothers to hold Skylar for the first time.

Taking turns for the next two hours, each person who had waited in the hall got a chance to hold the baby. Her dark purple skin was still warm and soft. Her eyes open.

The scene might have seemed morbid to some, but it was clear to Shannon and Kip that each one who held their baby viewed the moment as an honor.

When her turn came to hold Skylar, their close friend Jan was overwhelmed with love.

She had worried that it might be harmful to Shannon to continue this pregnancy. She had worried about exposing Jadon, her godson, to the potentially frightening scene at the hospital.

But as the day unfolded - with tears and hugs and smiles - she realized she had worried for no reason.

Kip was holding Skylar again when Jadon came running into the room, crawled onto his father's lap and stuck his dimpled cheeks up close to his baby sister.

"She's got long toes, Mommy, " he said.

Shannon laughed.

"That's her finger, " she corrected.

Jadon looked again, and in a quick moment before he ran out again to play with his trains, he saw Skylar just the way his parents were choosing to see her.

"She's pretty, " he said.

Epilogue

As Shannon and Kip had hoped, Skylar's liver was donated to Cytonet, a research company in Durham.

But they were disappointed to learn that her liver cells could not be transplanted into a child with fatal liver disease. Instead, they will be used by researchers working to improve the way cells are processed for transplants.

Shannon and Kip also were disappointed that Skylar was too small to donate heart valves.

But Cynthia Willis, a transplant coordinator with LifeShare of the Carolinas, the agency that arranges transplants, gave them reason for hope.

Since Skylar's birth, three more Charlotte-area couples whose infants had fatal birth defects have donated their children's livers to Cytonet. These donations were happening because Shannon and Kip had persisted in finding a way to turn their tragedy into a blessing for some other family.

Typically, babies with anencephaly cannot donate organs or tissues. But when the couple kept pushing, Cynthia learned that Cytonet could use the babies' livers.

Because of Shannon and Kip, LifeShare has changed its policy and begun offering tissue donation to all parents of dying infants.

Because of Skylar, parents of anencephalic babies will no longer be told that donation is out of the question.

Charlotte won't be the only place where that policy will change. Cynthia has been asked to speak about the new protocol next summer at a national conference of transplant coordinators.

"If you had not pushed us, we wouldn't be doing this, " Cynthia told Shannon and Kip. "What we have realized is that these families want this. What you've done and what Skylar has done is huge, and it will save lives."

Cynthia was so impressed by Shannon and Kip that she nominated them to represent LifeShare's donor families in the Rose Bowl parade in California on New Year's Day. One of them will ride on the Donate Life float holding a photograph of Skylar.

Shannon and Kip are proud to have been a part of changing the organ donation bureaucracy.

They have felt changed themselves by the experience of giving birth and saying goodbye to Skylar.

They are more patient with each other. More patient with Jadon. And more understanding of other parents who have suffered the loss of a child.

Will they have another baby? Kip is undecided, but Shannon is already taking extra folic acid just in case.

Either way, they have no regrets.

The day Skylar was born, they agree, was "the best day of our lives."

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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