12/22/17

All-smiles Josephine is parents’, care teams’ greatest gift

Josephine Schaljo comes to home meet her brother and sister.Josephine Schaljo is getting clothes for Christmas — 3-month-size pants and 9-month-size tops that will need the sleeves hemmed. But she’s here. Alive. And doing well. Parents Maranda and Kiel of Charleston weren’t sure that would be the case this time last year.

“There was so much unknown. Even with all the ultrasounds, our doctors were at times concerned our baby wouldn’t make it,” Maranda said. “We knew her limbs would be short, but we didn’t know what other complications she might face. … I remember just looking at the tree last year and crying.”

The Schaljos learned roughly half of babies with dwarfism survive until birth.

“Every single person we worked with at Carle was upfront, genuinely concerned and as positive as possible,” Kiel said. “We told everyone, ‘We don’t care what she has. Let’s just get her here.’”

Because of her parents’ decisions and support at every turn, Jo or Joey, as they call the always-smiling baby, was born April 3 by planned C-section. The delivery team quickly determined why the 7-pound, 15-ounce miracle stopped breathing when on her back. Her extremely small jaw, called micrognathia, caused her regular-size tongue to block her airway and required special surgery never before performed at Carle.

The Schaljo family of CharlestonNow the Schaljos faced another choice—travel to Chicago, St. Louis or Milwaukee for Joey’s surgery. Or put their trust in one of Carle’s more recent hires, Ashley E. Manlove, DMD, MD, a pediatric craniofacial and oral and maxillofacial surgeon.

“We wanted to stay at Carle if we could. We wanted things to be as stable as possible for our other children,” Maranda said.

She and Kiel spent their days in the Neonatal Intensive Care Unit (NICU) and their evenings at home with Patrem, 4, and Clark, 2—while always watching over Joey using Carle’s NicView webcams.

A confident nod from neonatologist Derrick Rollo, DO, FAAP, and diagrams skillfully and lovingly hand-drawn by Dr. Manlove helped the Schaljos choose Carle.

The distraction device for helping newborns with very small jawsThe procedure, called mandibular distraction, required Dr. Manlove’s team to install hardware on both sides of Joey’s jaw. Each day the devices pushed Joey’s tiny and pliable jaw forward just a bit so she could breathe without special positioning and learn to eat on her own.

“We usually keep the device in for 10 to 14 days, and with adjustments, we move the jaw about 1 millimeter in the morning and 1 millimeter in the evening,” Dr. Manlove said.  

“Most parents are nervous. And some, like the Schaljos, are fascinated and want to see and understand how everything works.”

They also wanted to document everything. The large binder they added to every day helped them keep track of what myriad doctors and nurses told them, as well as the bountiful kindnesses along the way.

“Through everything, we felt like Joey’s teams treated her like a queen,” Kiel said. “No doubt every child and family at Carle feels that way.”

Patrem and Josephine get to know one anotherDr. Manlove said relationships with families and coworkers make her rewarding work even more so.

“We all bonded quickly over helping Josephine and her parents,” she said. “They were in amazing hands with all the nurses, the pediatric anesthetist, everyone.”

Joey will return to Carle in March for the Oral and Maxillofacial Surgery (OMFS) team to repair her cleft palate.

Last Christmas, with unborn baby Joey’s fate so uncertain, family members weren’t sure what to do.

“They didn’t ask Maranda but they asked me if they should buy presents for the baby,” Kiel said.

While Joey’s moJosephine, all smilesm and dad will focus on special clothes, the little one who loves broccoli and her bouncy seat will collect toys, books and other gifts galore this Christmas from the circle of family, friends and church friends that supports Maranda and Kiel.

“Looking back, sometimes I don’t know how we got through this,” Maranda said. “God did really mighty work in this. It wasn’t us.”