Kelly Sullivan Horsford had every detail of the birth of her first child planned out. She wanted to be at home, surrounded by the people she loved, all welcoming her daughter to the world.

But Ms. Mahaela Jean Sparrow had other ideas.

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At 43 weeks, Horsford bowed to pressure coming from her nurse-midwives and agreed to be induced. Instead of the natural home birth she had planned, Mahaela’s birth story included a low dose of pitocin to stimulate contractions, almost three days of labor, an epidural that mistakenly turned into a spinal epidural that left Horsford paralyzed from the waist down and fears that the baby’s heart rate was dropping dangerously low.

Seven hours after Mahaela, now a thriving, happy two and a half year old, was born, Horsford checked herself out of the hospital, and promised herself that the birth story would be different with her next baby.

Fast forward seven months, and Horsford became the first of her group of new-mom friends to get pregnant with a second baby. At 20 weeks, the ultrasound revealed that Mahaela would have a sister – and something else.

The baby, the ultrasound showed, was missing her corpus callosum, which connects the left and right centers of the brain. It was an extremely rare birth defect, formally called Agenesis of the Corpus Callosum (ACC), which has no known cause. The new baby might never walk, talk or use the toilet, doctors told Horsford and her husband, Rich; at 27 weeks, their perinatologist pointedly informed them that they could consider a flight to Colorado, where late-term abortion is legal.

“But she was kicking and rolling and was feisty, she had a name,” Horsford remembers. “She was my baby, and I wanted to at least carry her for a couple more months. It was a little more time that I could have with her. She wasn’t necessarily expected to live long.”

What felt like an army of doctors started planning for the baby’s birth, and at first, Horsford and her husband dutifully, dazedly, went along.

But then, Horsford says, through her haze of grief and fear and hope, she remembered the promise she’d made to herself and her family, right after Mahaela’s birth. And so, with the support of their midwife, Violet Arlene Trea was born at home, in a waterbirth tub, after 4 intense quick hours and into Hospice Care.

“If her life was going to be short, we didn’t want it to be full of medical intervention,” Horsford says. “We made a hard decision with an open heart, with only feelings of love for her. It’s not something everyone can understand.”

The wonder, and the unknown, of their story is this: From the first moment of her life, Violet has been confounding everyone’s expectations. That very first night, she looked around with curiosity and will for life; the next day, at an MRI at OHSU, she sat perfectly, preternaturally still for a 45 minute reading without sedation, something Horsford insisted on that the radiologists had never seen before.

Today at 11 months, after many physical therapy sessions that began in the first weeks of her life, she can say 13 words and counting, including “Haela! Haela!”, her pet name for her sister and generally the first words out of her mouth when she wakes up from her nap and looks around for her best, beloved playmate. She is cruising on all fours and pulling herself up on furniture and eating with gusto.

Horsford knows that someday, somehow, ACC will show up. People with the disorder often have learning disabilities, or trouble with social interactions. But as Violet hits every milestone, the family rejoices. And Mahaela’s leaps and bounds, too, have taken on even greater meaning, Horsford says, as the family has learned to take none of their many blessings for granted.

“No victory is too small to celebrate,” she says. “We are thrilled with everything that they do.”

As a celebrated family on PDX Kids Calendar – Kelly was treated to photos compliments of Urban Photography, a facial with Briana of Legends Salon + Spa, a mani-pedi from Pink and White Nails and a custom necklace hand stamped with her two daughters names from TK Jewelry.

We hope you have enjoyed a little glimpse into the life of just one of the amazing Portland Families out there. We look forward to continuing this feature and, as always, welcome your feedback.

Disclosure:
Celebrated families are chosen solely by PDX Kids Calendar Publishers. We are looking for all kinds of people to celebrate for all different reasons! For consideration as a future Celebrated Family, please complete our submission form.