Posted on 09/28/2007 11:56:49 AM PDT by Graybeard58
Jessica Weatherford lies small and helpless on the operating table, staring at a blue surgical sheet hanging inches from her face.
It blocks her view of the Caesarean operation on the other side, as a doctor delicately reaches for her baby.
A baby Jessica’s been waiting for.
A baby she prays will live long enough to hold in her arms.
The physician and his assistant talk quietly as they operate. But Jessica, 29, feels nothing, hears nothing except the banter from her husband, Dave, who is talking because he has to do something.
“This is a lot different from last time, isn’t it, Jess? You were out for the other one. … And gosh, you can see so much this time.”
She nearly laughs. Dave, joking with her, just as he always has, just when she needs it the most. Dave, dressed like a surgeon, blue scrubs tight, a white surgical mask blotting out his mustache and goatee. All she can recognize are his brown eyes, the ones that turn up at the corners when he smiles.
Nearly two years earlier, she’d gone through an emergency Caesarean, deep anesthesia and deeper anxiety about the outcome. But it brought forth their baby girl, Victoria “Tori” Ann, now nearly 2.
This time, Jessica is awake, the C-section planned, but there is no question about this outcome. Already, planning has begun for their baby’s funeral.
Their baby boy will not endure beyond Jessica’s womb. Zeke, they have named him, short for Ezekiel, meaning God is my strength. Jessica wanted to name him soon after the diagnosis. She wanted him to be as real to the world as he already was to her.
Dave, 35, is her best friend. He has helped carry her grief during this months-long journey. He has shared her laughter, prayers, tears. This has been his walk, too.
The doctor tugs hard and between his hands a tiny head appears, covered in wet curls.
Jessica feels her husband’s hand gripping hers. He’s as scared as she is.
The operating room is eerily quiet as everyone looks to Zeke.
Jessica has prayed that she will see beauty instead of her son’s deformities. She’s prayed that the sadness she knows is coming won’t rip her heart beyond repair. She’s prayed too that maybe God will work a miracle, make Zeke whole and perfect.
But after four months of medical tests, she’s not blinded to reality.
She knows that God has already performed one miracle: Zeke is alive.
The choice
Psalm 139, 13-14: “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made.”
The worst day was Nov. 6.
Jessica remembers her excitement when she finally saw an image of the 20-week fetus inside her. She remembers staring at Dave’s face as the sonogram technician, a young woman, smiled when she told them they were having a boy.
A boy!
But the sonogram technician grew quiet as she swirled the wand this way and that on Jessica’s belly. She remembers that the technician just … kept … looking.
Jessica and Dave were ushered into a waiting room where they spent nearly an hour. When they finally saw the doctor, his face wore the news.
I’m sorry, he said. There are abnormalities with your baby’s brain and abdomen. Problems too great for medical science to fix.
Jessica felt her throat close. Felt the sting of tears, the shudder of a broken heart. In the blink of a routine appointment, their world spun from giddy joy to gut-wrenching sorrow.
The doctor left the couple alone to grieve.
And choose their future.
Jessica had miscarried before, before she gave birth to Tori. The sadness still lingers. One day pregnant, the next day not. No baby. No funeral. No memories, except the day they learned the baby had died.
But this time, she’d been feeling this baby. He felt strong. She’d watched her belly jiggle with the impression of a little foot pushing out. She’d felt him kicking and twisting and reminding her: I am here! He had already brought her so much joy.
After carrying him for weeks beneath her heart, she knew he’d stay in her heart forever.
Couldn’t the doctor be wrong? Maybe his problems weren’t so overwhelming …
But days later, more tests would bring more bad news: His brain wasn’t forming properly. His face had deformities: a double cleft lip and problems with his eyes. His heart’s veins and arteries were on the wrong sides. An omphalocele — a sack containing half his organs — was growing outside his body.
An amniocentesis confirmed a nonhereditary birth defect: full trisomy 13, a condition of having three copies of chromosome 13.
One extra hiccup of DNA, a genetic error sabotaging a human’s destiny.
As the couple drove home, the road at times seemed to disappear behind their tears. Jessica hurt so badly for her little boy, who would never grow up, never even leave the hospital. She asked Dave to stop.
A park bench beckoned. The late autumn sunshine was warm on Jessica’s face. She could see the fiery reds and brilliant yellows of fall leaves. The air was sweet with a hint of damp earth.
Dave’s arm found its cuddling spot on her shoulder. She nestled against his chest. The couple read Scripture, looking for words that would ease their heartbreak, words that would help them understand.
And the words came. They read about Abraham, who was told to sacrifice his son. They read about Hannah, who had so wanted a child she promised him to God, no matter what. They read about Jesus, God’s son who had died for them.
Ending Zeke’s life now wouldn’t short-cut their sadness. God has a reason and a purpose for this little baby, Jessica told Dave.
She decided that the best gift she could give to her unborn son was to love him until his death, even if the only fullness of his life would be in the soft cushion of her womb.
As long as Zeke lived, they would love him as best they could. Maybe he would go all the way to term. Maybe they could hold him before he died.
Jessica vowed she wouldn’t let herself wallow in grief. She would choose to seek joy. Look for it in every kick, every flutter, every wonderful moment.
She knew there would be days and nights when her tears would spill. But she knew faith doesn’t mean there is no sorrow; faith helps you through the sorrow.
She wouldn’t let the grief tear at the fabric of her five-year marriage with Dave. They weren’t superhuman, but they needed to be strong for each other.
They knew most people wouldn’t continue a doomed pregnancy. But for them, it was the right choice.
That decision was easy. Living with it would be another matter.
Jessica knew she would need help.
Finding comfort
Two weeks later, a phone rang at a house in Westport.
On the other end, a young woman cried and cried, unable to speak. But this was a phone call Patti Lewis had answered hundreds of times before.
Is your baby sick? Lewis asked. … It’s OK to cry. … Let yourself cry. … I’m here. …
“Everybody cries when they call here,” said Lewis, 56, who has helped some 200 families through her nonprofit group, Alexandra’s House, a perinatal hospice care center.
She opened the house to be a place of caring for families grieving the loss of any infant, be it an unexpected stillborn, a miscarriage, an abortion or an unborn baby the parents know will not survive.
Sometimes people hang up when Lewis answers. Words often escape the grieving parents who find her.
“But they always call me back,” she said. “It’s just so hard.”
She listened to Jessica, an expectant mother struggling to tell a stranger the diagnosis for her son. And Jessica found a soft voice who knew how it felt when dreams collapse.
Within days of her call, Jessica and Dave visited Alexandra’s House, walking through its gated archway, past the stone lambs on the lawn.
Lewis walked them through the house, past the front door where a prayer candle flickered. Past the book of life filled with handwritten names of children whose families have sought refuge here. She showed them the wall of life — photos of babies whose bodies weren’t strong enough for this world.
Lewis shared with them how other families loved their babies at death. Told them all the ways they could love Zeke to remember him forever.
She told them it’s OK for families to hold their baby, even if the baby has died. She told them it’s OK to bathe and kiss and baptize the baby, take photos and dress the baby, make plaster casts of little hands and feet, even take the blanket the baby was wrapped in.
Anything that touches him becomes cherished, she told them.
“It’s the only moments they’ll have in a lifetime of memory,” she said.
She told them she’d help them but would only do as much as they asked.
Jessica and Dave listened to all that she said.
And later that night Jessica wrote in her journal that for the first time in weeks, she felt hope.
Learning, accepting
By January, Jessica and Dave had gone two months with the knowledge that their little boy would not live very long.
They had informed family, friends, neighbors. Their church, Olathe Bible Church, held a prayer service for them and Zeke. They had switched physicians, seeking out medical professionals who supported their decision to go to term.
Zeke’s due date was five weeks away. On this day Jessica waited at her doctor’s office in Overland Park for Lewis to join her for a routine appointment. She sat in a corner, away from the mothers-to-be, a sea of blossoming bellies.
Despite everything she knew, Jessica was happy. Her brunette curls were wrapped in a lacy black scarf. Her face glowed, with just a sneeze of freckles across her nose and cheeks.
For weeks she had avoided contact with other pregnant moms. She didn’t want to ruin anyone’s joy telling them about her situation. For her, there would be no prenatal aquatic class — too much sharing. No magazines about pregnancy — too painful. While other moms-to-be shopped for baby clothes, Jessica searched for just one outfit for her baby.
A special outfit to bury him in.
When Lewis arrived, Jessica told her about finally venturing into a Babies R Us with Dave just two nights before. They wandered the aisles looking at layettes and onesies and tiny T-shirts.
Both parents barely made it out of the store before beginning to cry.
“We weren’t ready for that yet,” Jessica said. “But we will be.”
Every prenatal appointment reminds her of reality, especially the Level II ultrasounds that show clearly the many problems her little boy has.
Just for this day, no ultrasound. Just a normal prenatal appointment where she will be weighed, have her tummy measured and listen to Zeke’s heart.
“It’s so comforting to hear that,” she said.
Inside the office, certified midwife Patti West breezed in and asked Jessica how she’d been.
Jessica patted her belly, talked about a few aches and pains, then opened her notebook, the one where she logged the medical terms that changed her life, the one she kept to remind her what questions to ask.
West listened without interruption as Jessica told her about her fatigue, some odd cravings, how she knew she needed to eat more protein and drink more water, maybe not so near bedtime.
West measured Jessica’s belly.
“Perfect. … Your weight is perfect. A 3-pound gain.”
She swabbed Jessica’s abdomen with a blue goo and held a Doppler to it.
Thump-thump. Thump-thump. Thump-thump.
The sound of Zeke’s life filled the room.
To Jessica, it was the best music in her world.
“Nice and strong,” West said, smiling at her patient. West focused on what was right with Zeke, not what was wrong.
Then she asked the question, the one Jessica had been dreading: Had she decided on a vaginal birth or a Caesarean?
Jessica’s face grew dark. She’d dreamed so much of having a natural childbirth. Because she’d already had one C-section with Tori, she knew that having another would mean any future babies would also have to be C-sections.
Yet another dream slipping from her grasp.
West spoke in her gentlest voice: “Because of his special condition, a Caesarean might be best, because it would give you more time to enjoy your son.”
Jessica began to sob. Lewis patted her back.
Jessica told West she was leaning toward a C-section but wanted time to think.
West nodded and told her she was doing great in her pregnancy. No complications in her health. Good news that Jessica could focus on this day.
Outside the office, Jessica inhaled and sighed. “Yup, that was hard. The tears come so unexpected and so easily sometimes.”
Lewis reminded her how much she was learning and preparing for Zeke. She told her some facts about babies who die shortly after birth.
“They remain soft for hours … they look like they’re sleeping.”
She reminded Jessica that a birth plan would help control who would be in the delivery room and how they wanted Zeke’s final moments to be.
Jessica and Dave come from large families. They didn’t want to exclude anyone from the birth, but they knew many of their siblings probably would be uncomfortable.
Lewis urged Jessica to talk with her family and tell them it’s OK to cuddle a dead baby. It’s also OK not to.
Lewis told Jessica about the arrangements that a hospital could make for mothers whose infants die, like moving her into a room on a different floor, away from other mothers and their babies. When leaving the hospital she could go out a different door, so she wouldn’t have to see another new mom cuddling her baby.
Jessica nodded. She marked it all in her notebook, the one that made her feel as if she had some control in her life.
She nodded and nodded.
Lewis asked what worried her the most.
Jessica didn’t hesitate: She was sad that Tori wouldn’t know her little brother, that his memory would be lost to her because she’s so little.
“We’ll tell her about him,” Lewis said. “We’ll tell her how she loved him so she’ll know. … Sometimes, siblings make a drawing for their little siblings. And we can place it in the casket with them.”
Jessica nodded again. So many decisions to make, and time was running out.
Celebrating Zeke
“Tori, give baby Zeke a kiss. Give him a kiss.”
Three adults were trying to talk little Tori into kissing Jessica’s belly. But right now Tori was more interested in eating a raisin.
When Jessica first heard about a photographer who would take photos of a dead baby, she remembered her reaction: “How weird.”
Still, Patti Lewis had witnessed these photo sessions, hours after the death of a baby. The photos from Now I Lay Me Down To Sleep, a nonprofit network of photographers, are heirloom quality, she told Jessica. Babies who look purple can be made to look pink. Babies whose faces are different can have close-ups of one perfect hand or toe.
Angie Bocquin, an Olathe photographer who works with Now I Lay Me Down to Sleep, provides her services for free to families losing an infant. She offered to take maternity photos of the Weatherfords.
Jessica decided to do it, if only for another chance to celebrate something good with Zeke: the pregnancy. But now she very much felt like a fat, unsexy, bloat-prone pregnant woman — not someone ready to look beautiful for a camera.
Bocquin knows how to bring out the best in couples. She showed Jessica and Dave photos of a husband caressing his wife, her pregnant belly highlighted, bare skin peeking out from behind a black veil.
Jessica giggled.
“I’m not sure I’m comfortable doing that,” she said.
“You don’t have to show anything you’re not comfortable doing,” Bocquin said. “We can do whatever you like. We’ll just play.”
Jessica disappeared into the bathroom, changing into a black tank top, adjusting the black veil like a skirt, swiping on a touch of lipstick.
Feeling awkward, Dave let Bocquin pose his hands on Jessica’s belly. His smile was forced, his face sweaty.
But Bocquin was patient.
She moved to the right, then to the left, her camera clicking.
“Think about how much you’ve been through together,” she said. “How strong you’ve been.”
Click. Click. Click.
“Jessica, look up at him,” she said. “Give him a kiss.”
Click. Click. Click.
She laughed when they laughed. She complimented Dave. He was having fun. The couple’s arms entwined. Dave relaxed. This time when he smiled, two dimples popped out.
Jessica seemed to bloom.
A glorious session — except for Tori. She wasn’t interested in anything except the toys in the prop room.
Then Dave discovered that a raisin would balance on top of Jessica’s belly.
“Tori, get the raisin. … What is that? Is that where Baby Zeke is? … Kiss Baby Zeke. … Tori, kiss baby Zeke.”
She looked at the raisin. She looked at Jessica. Almost in slow motion, she gave a tiny kiss to her mommy’s belly.
Click. Click. Click.
Zeke’s party
Jessica and Dave’s parents cried when they heard about their grandson. Dave’s mother, Kathy Weatherford, who had borne 10 children, took the news so hard she had a mild heart attack shortly afterward.
But the person who felt the pain the sharpest was Jessica’s twin, Jacquelyn Thompson.
The two sisters, born just minutes apart, grew up as best buddies, finishing each other’s sentences, running cross country together at Gardner Edgerton High School, each “just hoping not to finish last,” Thompson said.
They graduated in 1996. Jessica was the valedictorian. Jacquelyn, the salutatorian.
“I remember hurting because she was hurting,” Thompson said about the day Jessica told her. And the thought of holding a dead baby wasn’t a pleasant one to Jacquelyn.
“But how could I not be there?” Jacquelyn asked. “Jessica needs me.”
“At first, this was all about Jessica’s pain. … But now it’s about loving him, providing for him the best way they can.”
Little Zeke, she said, “has already touched so many more lives in his short life than some people do in a lifetime. … He’s become a lot more real to everyone. The neat thing about this pregnancy is seeing the people come together because of Zeke.”
Jessica told Jacquelyn how she was seeking joy, choosing to see the happiness. Jacquelyn and other family and friends followed Jessica’s pregnancy by reading her journals on Caringbridge.org, a Web site that people use to communicate to others the ups and downs of a health crisis. Hundreds of friends and strangers had already sent Jessica e-mails.
Jessica was saving everything, and it was growing into a nice pile of paper.
And that gave Jacquelyn an idea: a scrapbooking party would celebrate Zeke.
“It’s not like you can throw a baby shower for someone who knows their baby is going to die,” she said.
One Saturday afternoon, a dozen friends showed up at Jessica’s house, armed with colored papers and embellishments, glue and glitter, sayings and cutouts, and lots of brownies and cookies. Jacquelyn assigned everyone a job.
For four hours the group organized Zeke’s ultrasound photos, Jessica’s diary entries and snapshots. One page displayed three black-and-white ultrasounds framed with blue rickrack. Another highlighted a diary entry and a Bible verse. Yet another showed the stark science of abnormal chromosomes that dictated Zeke’s future.
The 30-page book of memories was a gift that overwhelmed Jessica.
At the end of the party, just when people were leaving, Zeke began kicking so hard that she grabbed Jacquelyn’s hand to share the moment.
“Oh, he’s kicking. With both feet. Feel that?”
Thompson couldn’t believe it, a tiny knocking so hard against her hand. Her nephew.
It made her laugh and laugh.
But just steps away hung the clothes Zeke would be buried in, a tiny blue-striped outfit embroidered with the words Sweet Baby Boy.
About this story
Every year, thousands of parents in the U.S. learn that genetic disorders will end their babies’ lives within days, hours or even minutes of birth. The Weatherfords’ story illustrates a growing trend in the way families deal with the knowledge their babies will die.
Although it is not a choice most parents make, the idea of carrying these babies to term has gained acceptance. More families are turning to perinatal hospice programs for help. The Weatherfords agreed to let The Star follow them through the process in the hope that their story might help other families.
To report “Zeke’s Gift,” Lee Hill Kavanaugh spent hours at the Weatherfords’ house, reading Jessica’s online journal, attending their church, going to a prayer service for them, witnessing Jessica’s doctor appointments, and interviewing family and friends. She saw every aspect of Zeke’s birth and death and heard every key conversation.
Few scenes were reconstructed, and those that were resulted from careful interviews with all key participants. No dialogue appears within quotation marks unless Kavanaugh heard the conversation herself.
Part 1: Even on the darkest of days, the Weatherfords still find joy.
Part 2: Zeke brings many gifts to his parents — the caring of strangers, the love of family and friends, the strengthening of their faith — but they learn the greatest gift is time with their son.
Audio photo gallery (viewer discretion advised):
http://www.kansascity.com/static/media/Audio_Photo_Gallery/
That Alexandra’s House must comfort many parents.
Good story but very difficult for me to read. My brother’s son and wife lost their baby just minutes after his birth last March. However, this baby’s death was totally unexpected. We’re still hurting.
I have prayed for Jessica and Dave. I hope you all find time to also.
What a sad but inspiring story...
My grandson, CJ, was born Mar 22, 2006...
He weighed 8 lb 9 oz and was perfectly formed... He looked like his Daddy had as a new born...
At 2 days old instead of going home as we expected he was rushed to the children’s hospital in Chattanooga...
he had not eaten and an xray revealed some type of bubble in his stomach area..
CJ spent the next 3 months in the neonatal ICU...
He had something wrong in his colon...
He was bright and alert and I spent every moment I could with him...teaching him his ABCs, singing, and describing trees and the family, especially his 2 big sisters...
he had big old feet and I would tell him Nana was looking forward to watching him play in the Super Bowl..
Although his problem was normally found in premmies and CJ had been a full term baby, we were told that he would out grow it by age two and the colon etc would be fully developed by then..
CJ kept growing and doing great in every other way and there was no way of knowing that he was not going to live long...He ate good and was normal in every way...
In Aug the colonosophy bag etc would be taken off and there was hope for a normal life etc...
He started to deteriate in June and was put on life support...
An operation to remove infected colon just proved that he was worse than the doctors had thought...
On Saturday, June 10, 2006, after everyone had said goodbye, CJ was taken off life support and died about an hour later...
As he lay in his tiny casket, CJ looked just like his Daddy at that age, but asleep...
My new little best buddy was gone..
I am so thankful I “annoyed” the doctors and nurses for the short three months of his precious life by being at his bedside nearly every day...
I got to hold him almost every time and talked to my grandson the whole time I was there...He went to heaven knowing me more than other members of the family...
Is it worth it to love a child who will not survive?
I would rather have an 18 month-old CJ here now, sitting in my lap and messing with the keyboard with sticky fingers as his sisters did..but I did have him for his short, but wonderful life...
And I can say with David...”Can I bring him back again? I shall go to him, but he shall not return to me” 2 Sam 12:23
My mom was married at age 15 in 1935, in 1936 her first baby boy was born and died at birth, in 1937 my brother was born and still is around. In 1938 mom had another baby boy who lived for 10 months. I have six living brothers and sisters and my mom at age almost 87 still remembers with love in her heart the two babies she lost. Even with the passage of 70 years those loving memories are still with her.
Nana, your story literally broke my old heart. . . again. May I ask your permission to send your story to my brother who lost his grandson, Brett Javier, unexpectedly at birth this past March? We can easily believe that God knows what he is doing where by his mysterious ways our hearts are so saddened but it sure doesn’t make it any easier does it?
Yes go ahead...
I pray they find comfort and peace through Jesus Christ the Lord....
Thanks again and God bless you and your family.
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