Counting Down
Jenna clutched a wicker basket in the space between her belly and her heart, as a teacher from down the hall explained its contents.
The woman’s sixth-grade English class had read Sadako and the Thousand Paper Cranes, a fictional account of a young girl who lived a mile from the atomic bomb explosion in Hiroshima, Japan, and developed cancer at age 12. Sadako clung to the legend that someone who folds 1,000 origami cranes would receive a wish. She passed the days in her hospital bed folding cranes and hoping to survive.
After teaching the book, Jenna’s coworker had instructed her students to fold birds of their own. And she had encouraged them to find someone to whom they wanted to grant a wish.
The kids had seen teachers wearing yellow Hope for Harper shirts on Fridays. They’d learned a new phrase – spina bifida – attached to Mrs. Brown’s pregnancy and the unknowns that came with it. So they’d shaped their own geometric birds with Jenna’s unborn daughter in mind.
Presented with the basket and the story behind it, Jenna wiped her eyes, swallowed down the emotion and took a breath. She didn’t want to miss a teaching moment.
She thanked the students for their gift and reminded them of the importance of not only compassion but accepting differences. Harper would be different than other children. And one day she’d be here, in middle school, those toughest of years. Jenna had seen kids tease another student for walking with a limp and tried to imagine life for a little girl in a wheelchair, a little girl whose bathroom breaks involve a trip to the school nurse.
Jenna already knew how tough it was to be different. She taught English to Speakers of Other Languages, students with more stories of hardship behind them than some of their peers would experience in a lifetime. Some rode atop trains from Latin America to find their parents in the United States, facing gang members ready to kill for money, clothing or a thrill. Others lived in fear of deportation and left school when court dates approached, abandoning education in hopes of being forgotten.
Most teachers didn’t last long in this job. After six years at Northwoods Middle School in North Charleston, Jenna was considered an old-timer.
Her girls especially confided in her, a young teacher who withheld judgment when they talked about older boyfriends or threats that social workers might remove their baby siblings from bedbug-infested apartments or loving parents who just couldn’t afford a highchair or a crib.
Those experiences emotionally prepared Jenna for her own challenges, but they also presented a new one. Some of the students who had confided in her – and often relied on her -- understood that Harper’s arrival might mean their favorite teacher’s departure.
Jenna’s status at work became another unknown. Just as doctors couldn’t answer Jenna and Stephen’s questions about Harper’s health, Jenna couldn’t allay her students’ fears of losing her.
She ticked off the days until June 17 – when Harper would arrive, along with answers to all those questions – in two-week increments. Twice a month Jenna went to MUSC for an ultrasound to measure fluid levels on Harper’s brain and monitor her development.
She never went alone. Stephen or Jenna’s mother accompanied her to every appointment since Harper’s diagnosis, holding Jenna’s hand in the dark room and watching Harper’s silhouette dance on the screen. They guessed about the little, inconsequential things – her eye color, whose nose she’d have – but never the big, nagging questions.
Jenna and Stephen finished the nursery: Harper’s white monogram against a fresh coat of gray paint, a sign that said “Fearfully and Wonderfully Made.” And they packed a hospital bag: a cross blessed by a priest, a new headband for their baby to wear each day. They planned the things that they could.
On June 13, Jenna woke up and rolled over to see Stephen lying beside her, quiet and thinking. How are you feeling? she asked.
Scared, he told her. Scared of the unknown.
She told him she was too. Not only did Jenna worry about the severity of Harper’s condition but her own capability to provide their baby with everything she would need.
The couple talked it through, like they always did, and broke it down into something more manageable. First, delivery and making sure Harper is healthy. Then, getting her though her first surgery. From there, onto recovery. Only after she healed could they worry about what happens next, let alone the rest of their lives.
They had learned over the past five months that they couldn’t control the future any better than they could predict it. And as much as they feared the unknown, they had committed to it.
In three days, they would stop wondering. They would have Harper, and they would have answers.
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Medical Glossary
Chiari II malformation: condition associated with MMC spina bifida, in which the brain stem and hindbrain extend beyond the base of the skull into the spinal canal.
ETV (endoscopic third ventriculostomy) surgery: procedure to treat hydrocephalus as an alternative to a shunt. ETV creates an opening in the third ventricle to allow cerebrospinal fluid to flow via an alternative route to be absorbed
Hydrocephalus: enlargement of the normal fluid cavities of the brain, with elevated pressure in the brain cavities.
MRI (magnetic resonance imaging): technique that uses magnetic fields to make pictures of internal organs.
Myelomeningocele (MMC): most severe form of spina bifida, in which a portion of the spinal cord, nerves and their coverings protrude through an opening in the back.
Spina bifida occulta: neural tube birth defect, in which structures in the back fail to close properly.
Ventriculomegaly: enlargement of the fluid-filled structures of the brain, called lateral ventricles.
Shunt: device that allows cerebrospinal fluid to drain to another part of the body.
Tethering: condition often associated with spina bifida, in which tissue attachments of the lower spinal cord limit movement of the spinal cord within the spinal column.
Ventricles: each of four communicating cavities within the brain filled with cerebrospinal fluid.
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