BANGOR (AP) – An 8-month-old baby from Burkina Faso who was born with a life-threatening deformity of the lower spine has undergone lifesaving surgery at Eastern Maine Medical Center.

Marie Ilboudou is spending several months in the Bangor area, where she has been being treated, free of charge, by pediatric specialists. But when she returns to her African homeland, Marie faces an uncertain future.

In this country, Marie’s condition, commonly known as spina bifida, would most likely have been diagnosed before she was born and treated at birth, minimizing damage to her nervous system and increasing her chances at living a normal life.

In Burkina Faso’s capital city of Ouagadougou, where Marie’s family lives, there was no way to diagnose or treat the problem.

Since she was born last September, what started out as a small opening at the base of her spine has worsened. As the contents of her spinal cord bulged out into a swelling the size of an orange, the nerves that affect the lower part of her body were damaged. Pressure from poorly circulating spinal fluid built up in her head, pressing on her brain and deforming her skull. She has been at great risk for meningitis and other potentially fatal infections.

Without treatment, Marie would be unlikely to survive more than a year or two.

Her case came to the attention of the Children’s Medical Mission, a Boston-based Christian charity that connects children with the care they need. The charity contacted the spina bifida clinic in Maine, to see if free care could be arranged.

Last Wednesday, Marie’s pediatric neurosurgeon, Dr. David Weitman, repaired the opening in the lower part of her spine. The next day, Marie was back in the operating suite while Weitman placed a permanent plastic tube that drains fluid from her brain into her abdominal space, where it will be absorbed into her bloodstream and excreted in her urine.

Marie’s foster mother, 76-year-old Audrey Junkins of Hampden, stayed with the baby as she recovered in the hospital’s pediatric intensive care unit. “She’s a good baby,” said Junkins, rocking steadily back and forth. “We’ve been getting to know each other.”

Junkins, who has cared for many “medically fragile” foster children in the past 30 years, stays in Marie’s room 24 hours a day, feeding her, changing her diapers and walking the floors with her in the dimly lit, quiet hours.

But Marie’s nervous system has been irreversibly damaged. Weitman said she will likely be wheelchair bound, unable to control her bowels or bladder and prone to infection all her life. She may have permanent mental retardation, too, due to the pressure on her developing brain.

She’ll be dependent on the day-to-day care of others and susceptible to a host of medical complications. Even with the best of care and medical services, which are unavailable in her homeland, she’ll be unlikely to survive into young adulthood.

The grim outlook raises questions about whether the prospect of a few more years of life justifies the huge outlay of time, money, faith, technology and love that is supporting her stay in Bangor.

Ellen McDaniels, co-director of Children’s Medical Mission, admitted that the ethics of Marie’s case are tricky.

“We ask ourselves these questions every day,” she said. “Our answer so far is that we’re not God. The alternative to doing this is that she would certainly die. At the very least, we know all of us have done all we could for her, with a full heart.”

Dr. Jonathan Wood, director of the pediatric intensive care unit, said the baby will probably stay on the hospital’s pediatric floor in the coming week, then be discharged home with Junkins.

Marie will return to the hospital for follow-up care and stabilization as needed, Wood said, and her stay in Maine may be extended for as long as six months before she returns home to her mother.

AP-ES-05-24-04 1025EDT



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