Non-profit helps family treat medically fragile child

By Jenn Director Knudsen

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Like any mom, Janette Bach, 36, knows when her child is hungry. Unlike most any mom, however, Janette quickly prepares 4-year-old Hannah’s liquid meal, gets down on a blanket beside her and expertly sates her daughter’s hunger—via feeding tube.

No longer a toddler, Hannah knows not to pull out her tube. But she used to. Now, as the cream-colored PediaSure drains directly into her stomach from a feeding bag held aloft on an I.V. stand, she plays on the family room floor and bobs her head of brown curls and flaps her hands to music her dad, Rob Bach, 39, set for her.

“Music’s a constant for her,” said Rob, home for the lunch hour on a recent weekday from his job at a semiconductor company near the family’s modest Hillsboro home. Piped in Janette: “She has her own MP3 player.”

And her own skilled nurses, who work in Hannah’s home throughout the night and accompany her when she attends preschool at Learning Years Day School.

Members of Congregation Neveh Shalom, the Bachs are the only Jewish client family of Children’s Nursing Specialties, Inc., a Southwest Portland-based non-profit that provides registered and licensed practical nurses for medically fragile children and young adults so they can live and be cared for at home.

Co-founded three years ago by Chris Thomas, CNS is Oregon’s only non-profit providing such services and today has 15 client families in the Portland Metro area, according to Executive Director Barbara Wood.

“This is a service that should be provided: To keep families together and to keep children in their home—it should not be for-profit,” said Thomas, herself the mother of a medically fragile young adult and chairwoman of CNS’ board.

A medically fragile child with many health problems but no diagnosis, Hannah required round-the-clock care since birth. She spent her first nine months of life in and out of Legacy Emanuel Hospital; since then, the Bachs have had skilled nurses care for Hannah in their home.

“In-home nursing … has been far less costly than being in the hospital,” and the nurses trained the family how to use Hannah’s medical devices, Janette said of their two sources of nurses, first from a for-profit company and currently from CNS.

Hannah’s feeding paraphernalia is everywhere in the Bach’s adjoining kitchen and family room. That equipment is but a remnant of all the life-saving devices she once needed to survive.

Doctors believe Hannah stopped growing at about 28 weeks’ gestation. She was born without the corpus collosum, the bundle of nerves that bridges the brain’s left and right hemispheres.

Her heart did not work properly, and she often nearly choked to death on her own saliva and mucous.

“We came home (when Hannah was 9 months old) with all this technical support,” including a ventilator, pulse oxymeter and oxygen and suctioning machines, Janette recalled.

The real cost of an in-home skilled nurse is up to $60 an hour; the Bachs at one point relied on nurses up to 400 hours a month. The Bachs qualify for coverage under the joint state-and-federally funded Medically Fragile Children’s Unit administered by Oregon’s Department of Human Services.

Rob said his family’s financial situation proved problematic for Norcross, Ga.-based Pediatric Services of America, Inc., a for-profit company supplying in-home skilled nurses for families with medically fragile children.

The Bachs employed PSA for about two years until the company cut off the family, according to Rob and Janette. The couple quickly turned to CNS, citing its non-profit model, local headquarters and fewer employees. (CNS now has 35 nurses.)

“The experience with CNS as a non-profit has been wonderful,” even now as the family rely less on skilled nurses than previously, said Janette who, despite clear stresses, has an easy laugh.

Hannah’s ventilator recently was removed; her tracheotomy, still visible, is closing up. A night nurse turns Hannah throughout the night as she learns to breathe independently in various positions.

Hannah, who also has severe scoliosis and a twisted right foot, now can walk a bit on her own and constantly surprises her parents and big brother Gabriel, 6, with her cognitive leaps, Rob said.

The family is very open about its many challenges. Among other advocacy activities, Janette and Rob are co-authoring and illustrating a book, “My Sister Hannah Goes Beep Beep.”

Rob provides the narrative while Janette creates page after page of compelling drawings of a machine-dependent baby girl and her big brother as the pair navigate life in and outside the home.

The family also hosts a less-stylized and more-raw account of its struggles at www.kintropy.com, a blog whose tag is “Parenting Uphill.” Rob says thousands read it.

Hannah may never live independently. Her parents don’t know. “It’s the advantage of not having a diagnosis; we don’t have a map,” Rob said.

But they do know their in-home nursing help is key, ultimately allowing a full family unit rather than a split one.

Said Janette: “CNS’ nurses (help keep) our family together rather than having to physically keep our family apart.”

TFor more information about Children’s Nursing Specialties, Inc., call 503-968-2401 or 866-968-2401; or visit www.wecelebratekids.com.