(This is the second of a four-part series that was published in the Charlotte Observer from Nov. 14-17, 2010.)
Once Shannon and Kip Brooks decided to give birth to a baby girl who wouldn't live, they faced a whole new set of difficult questions.
What would they tell people when the pregnancy started to show?
What would they say when people asked the baby's due date and gender?
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Could they persuade transplant officials to let them donate her organs?
So far, only a few people knew that Skylar was going to die because she didn't have a brain.
Kip's mother and Shannon's parents were devastated by the news that their granddaughter would not survive because of anencephaly. But they stood by their children's decision.
Shannon's obstetrician and her nurse midwife agreed to give her all the care she'd need. This was reassuring because Shannon and Kip had heard of doctors who dropped patients if they chose not to have abortions when babies have such serious birth defects.
As the news spread, Shannon and Kip were surprised that, even among churchgoing friends, there seemed to be more support for having an abortion than having the baby.
In that first week, their close friend Jan drove Shannon and Kip to see medical specialists in Charlotte. She told them she'd support whatever choice they made. But she worried Shannon's life might be in danger if she continued the pregnancy. And she reminded them the odds were against the baby being born alive anyway.
"The selfish side of me wanted it over, " Jan said later.
Jan was trying to be helpful, just as Shannon and Kip had been when her husband, Gary, was dying of Lou Gehrig's disease. With that memory still fresh, Jan wished she could spare her friends some heartache.
She wasn't the only one who felt that way. Jan told Shannon and Kip what she was hearing from others. Someone suggested Shannon wanted to stay pregnant to get attention. Others wondered why she would want to keep a baby if she knew it was going to die.
Kip was the one who got the questions: How can you let her go through this? Wouldn't it be better just to get it over?
Over drinks with a buddy, Kip laid out his feelings, hoping for understanding.
"Yeah, man, it sucks, " Kip remembers the friend saying. "But it's not like it's a real child."
Internet becomes a lifeline
On the Internet, Shannon and Kip discovered a network of people waiting to support couples who carry their terminally ill babies to term.
Before the Web, people affected by rare diseases might have found each other if they lived in the same geographic region. "But more often than not, it just didn't happen, " said John Grohol of the Society for Participatory Medicine, which encourages patients to be assertive and well-informed.
On the Internet, Shannon and Kip quickly found photographer Faith Massey, a volunteer with "Now I Lay Me Down to Sleep." It's a national group that offers "soft, gentle heirloom photographs" for grieving parents. All for free.
In May, Faith spent several hours in her Huntersville studio snapping pictures of Shannon, Kip and Jadon as they hugged, smiled and laughed for her camera.
Shannon proudly displayed her very pregnant belly.
Kip kissed it.
Jadon kissed it.
Faith wrote on it.
A close-up of Shannon's belly with SKYLAR printed in big red letters soon became the profile photo on Shannon's Facebook page.
It was a billboard to the world: Get used to the idea. Skylar is coming.
New friends, shared pain
Through Faith, Shannon and Kip met Tracy Winsor. This Charlotte mother of six boys had lost two other sons through miscarriages and had felt little support in her grief.
In 2008, Tracy and Sandy Buck, a Huntersville mother who had lost three babies, created the Be Not Afraid support group for parents who carry babies to term despite fatal diagnoses.
In April, about a month after they first learned of Skylar's anencephaly, Shannon and Kip met with Tracy at their home in Denver, N.C.
Tracy promised to do whatever she could to help, from just listening to helping plan a funeral.
She stayed for more than two hours, and was impressed that Kip remained interested. Usually during her visits, husbands didn't even stay in the room.
Could their baby help others?
With so much out of their control, Kip focused on organ donation as a way to use their tragedy to help other families.
He sent hundreds of e-mails to doctors, nurses, hospitals and transplant agencies trying to find someone who would help them donate her organs.
The answer was always "no."
The rules seemed strange. Donors must be declared brain dead. Even though Skylar would be born without a brain, she wouldn't qualify. The reason? She would have at least a partial brain stem that would sustain her breathing and heart rate for whatever time she lived.
In May, Kip sent a Facebook message to a man whose name kept popping up on websites: Charles Bearden, a transplant coordinator in Atlanta.
He offered to help, but added: "Most will say it's impossible."
A week or so later, on June 16, Shannon and Kip heard from Cynthia Willis, a transplant coordinator with LifeShare of the Carolinas, the agency that arranges organ transplants in the Charlotte region.
Charles had asked Cynthia to help this couple.
And she brought good news.
A way through regulations
It was true that Shannon and Kip couldn't donate Skylar's heart or other organs for transplant.
But they could donate liver cells and heart valves under certain conditions.
Skylar's liver cells could be donated if she was born - alive or stillborn - after 32 weeks of pregnancy. Shannon had already reached 30 weeks.
To donate heart valves, a baby has to be born alive, after at least 36 weeks of pregnancy, and weigh 8 pounds. If Shannon's pregnancy could reach full term, they might be able to donate.
When Cynthia left, Shannon called Kip at work, repairing cars at a Mooresville dealership.
At the news, he fell to his knees, tears in his eyes.
All his effort had finally paid off.
If they couldn't save their own child, maybe they could save someone else's.
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.
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, email@example.com, 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."