99 Minutes: Readers stirred by Shannon, Kip's story

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

It wasn't an easy story to describe.

A couple learn their unborn baby has a horrible birth defect, and they choose to continue the pregnancy knowing the baby will die.

I'd get halfway through that sentence, and I saw the reaction before I heard it:

Who would want to read that?

I'd quickly add: It sounds sad, but it's really beautiful.

I wasn't certain anybody really got it.

Well, as it turns out, a lot of you did.

Reaction to last week's series about Shannon and Kip Brooks and their baby Skylar, who was born without most of her brain and lived 99 minutes, has been overwhelmingly positive.

"Heartbreaking but uplifting at the same time" is how several readers put it.

Shannon and Kip learned of their baby's diagnosis in March. They were given two choices: They could terminate the pregnancy - which, they were told, is the most common decision - or they could give birth to a baby who wouldn't live long.

They continued the pregnancy in the hope of meeting their child, named Skylar Tianna, and perhaps donating her organs to help someone else.

Family members reached out to the Observer after the couple were told repeatedly that organ donation was out of the question. They wanted to raise awareness and change the policy.

As a reporter for more than 30 years, I knew immediately that this was more than a sad tale or a simple plea for organ donation. Photographer David T. Foster III understood, too.

It was about the freedom to make choices and to have them supported. It was about grief and love and making life meaningful. It was about facing a tragedy and trying to find something good.

Couple found peace

Like Shannon and Kip, I was often asked why they would choose to carry the baby to term when they knew she was going to die.

I don't know what I would have done in their situation. I'm not sure any of us can really know until we face it.

But as I spent more time with Shannon and Kip during the pregnancy and then during the incredible day of their baby's birth and death, I saw the value in their choice.

Yes, their story was about grief and loss. But it was more than that.

Shannon and Kip found peace on the day Skylar was born. They agree - the day they got her diagnosis was the worst day of their lives, but the day she was born was the best day of their lives.

Recently, I came across a passage that seemed to say everything I had been feeling about Shannon and Kip's desire to meet Skylar.

The passage is by Marilynne Robinson, a Pulitzer Prize-winning novelist:

"The ancients are right: The dear old human experience is a singular, difficult, shadowed, brilliant experience that does not resolve into being comfortable in the world. The valley of the shadow is part of that, and you are depriving yourself if you do not experience what humankind has experienced, including doubt and sorrow. We experience pain and difficulty as failure instead of saying, I will pass through this, everyone I ever admired has passed through this, music has come out of it, literature has come out of it. We should think of our humanity as a privilege."

Instead of viewing pain and grief as something they could avoid, Shannon and Kip let their hearts break.

They chose to pass through their "valley of the shadow."

And they found strength and meaning on the other side.

Kip expressed emotions in poetry, a craft he loves but had put aside when life got busy.

Shannon found comfort in a beautiful song, "I Will Carry You, " about another couple who chose to continue a pregnancy and meet their baby who lived for 2 1/2 hours.

In addition to getting time to hold their baby and say goodbye, Shannon and Kip succeeded in donating her liver cells for research that will help others. Their pursuit of organ donation has changed policy; local authorities have begun offering tissue donation to all parents of babies with birth defects similar to Skylar's.

Contempt and praise

As I expected, there has been debate about whether Shannon and Kip made the right decision.

One reader wrote: "Shame on this selfish couple to bring a dead fetus to term."

Another wrote: "I have mixed feelings on this story. On one hand, I can see the parents' need to be able to say goodbye. On the other hand, I feel it was wrong to put the mother's body through a pregnancy just to say goodbye."

Many praised Shannon and Kip for choosing to meet Skylar, if only for 99 minutes.

"I am a member of this couple's church, " one reader wrote. "I am also a health care provider. I have to admit, when I first heard what was happening, my thought was that I couldn't do what they did. Their strength and courage should remind all of us that, while we plan as well as possible, sometimes life doesn't go along with our plans."

One of the main lessons of this story is that Shannon and Kip, faced with two terrible choices, made the decision that was right for them even though it might not have been the easiest or most common.

Many parents who have faced similar prenatal diagnoses said they didn't feel they had a choice.

Someone I have known for years confided that she "terminated a pregnancy" several years ago when she learned her unborn baby had the same defect as Skylar.

She had a full-time job and a 3-year-old at home, and although she knew intellectually that she had a choice, she felt pushed toward "termination."

"What I heard (the obstetrician) say was, 'This is what you should do. This is what everyone does in this situation.'... I personally didn't really feel like there was a choice."

Maybe Shannon and Kip's story will teach health care professionals to explain the choices more clearly, with the understanding that not all people will choose what is medically most expedient.

And maybe it will teach the rest of us to withhold judgment and respect the difficult choices others make.