Couple undaunted by child’s challenges | Picture of starving girl leads to an extraordinary adoptionPHILADELPHIA – Reduced to bare numbers, the story of Katie seems impossible.
By: Tom Avril, The Philadelphia Inquirer, INFORUM
PHILADELPHIA – Reduced to bare numbers, the story of Katie seems impossible.
Age: 9 years.
Height: 29 inches.
Weight: Less than 11 pounds.
Yet that is how she was, lying in a crib in a Bulgarian orphanage, when Susanna Musser showed up to become her mom.
The little girl was alive, more or less. Her legs looked thin as broomsticks. Her skin was colorless, her brown eyes empty. She looked as if she might break.
Thousands of miles away, physicians at Children’s Hospital of Philadelphia reviewed her records and struggled to understand. Katie had Down syndrome, but that would not explain why, at the age most children enter fourth grade, she weighed little more than a baby.
The doctors eventually agreed with Susanna and her husband, Joe, that this was a case of horrific neglect – that Katie, along with more than a dozen other disabled children at the orphanage, was simply a victim of long-term starvation.
What Katie needed, in careful doses, was healthy food. Once she left the orphanage for her trip back to Pennsylvania, however, the hollow-faced child had other ideas.
Finally in the arms of parents who had waited months to hold her fragile body, Katie suddenly refused to eat.
‘My own child’
It began, as so much else does these days, with the Internet.
Joe and Susanna Musser had a large, happy bunch of kids in their cozy, gray-shingled house, at the end of a gravel driveway in Lancaster County, Pa. Joe, a former pastor, earned a living as a carpenter, while Susanna taught their nine children at home.
Then came Verity. The Mussers’ 10th child, whose name means truth, was born with Down syndrome. Though they knew almost nothing about children with disabilities, they saw her as a blessing from God.
So when Susanna started a blog, she named it “The Blessing of Verity,” and it quickly drew an avid group of followers.
One of them e-mailed Susanna to ask about adopting children with Down syndrome, so Susanna did some research. She came across a “Today” show video from 2007, with wrenching images of emaciated children, confined to cribs in a Serbian mental institution. Some, like Verity, had Down syndrome.
Devout Christians, Susanna and Joe couldn’t imagine that someone like their daughter would be discarded that way.
They looked at each other and realized that they, too, wanted to adopt.
The girl they had chosen to adopt lived in an orphanage in the city of Pleven, in northern Bulgaria. The couple had found Katie’s picture on an adoption-agency website and knew at once.
“It was like paging through a yearbook full of faces of strangers and suddenly coming across the face of my own child,” Susanna said later.
Friedman warned them that Katie’s medical problems were likely to be daunting. She had never seen a case of malnutrition this bad.
“This is quite remarkable what you’re doing,” the doctor told the parents.
“I don’t want to sound disrespectful,” Susanna responded, polite but firm. “There’s nothing remarkable about this. I’m a mother. I’m just saving my child’s life like any mother would.”
Legally, the brown-eyed waif was not yet their child, but Susanna and Joe didn’t see it that way.
They know some people, like Friedman, are in awe of the couple’s efforts. Others, Susanna knows, will just think she and Joe are crazy.
On her blog, after she and Joe successfully went through one of their pre-adoption evaluations for parental fitness, Susanna wrote this:
“For any of you who held this in doubt, the psychiatrist considers us to be in good mental health, and we have the papers to prove it! Haha!”
Susanna says there is nothing crazy or extraordinary about the whole thing, that it just requires love, hard work, and a bit of help.
And there has been help. The Mussers are not well-off and have no health insurance, but they belong to Samaritan Ministries International, a Christian health-care cost-sharing program, whose members would cover Katie’s medical bills. Readers of the blog, meanwhile, prayed for them and donated money to cover most of the roughly $28,000 in adoption costs.
A helping hand
And out of the blue, the Mussers got an offer from someone who understood their story in a way few could. His name was Adam Boroughs, a nurse at the Hospital of the University of Pennsylvania. After his wife, Amy, saw the blog, he volunteered to go to Bulgaria with the Mussers to get Katie.
Adam and Amy also have 10 children, seven of them adopted. Of the seven, four had something in common with Verity and Katie. They have Down syndrome.
Susanna first went to Bulgaria by herself in August to visit the orphanage and meet Toni Vladimirova, the local attorney handling the adoption. Susanna assumed that the orphanage, like many in Eastern Europe, was doing the best it could with limited resources.
It was not. Katie lived on the top floor with children that orphanage officials referred to as “malformations,” Vladimirova later wrote in a report to the national Ministry of Justice.
The top-floor children were bone-thin, their bodies stunted. They spent most of their time in cribs, and the air stank of urine and vomit, the attorney wrote.
The official explanation from the orphanage was that the children were not malnourished, that they were unable to gain weight because of their disabilities.
Susanna and her attorney felt otherwise. The children were given nothing to eat but a thin, whitish liquid in a bottle, they said. Susanna thinks it was watered-down yogurt, mixed with a broth or fruit puree; Vladimirova said it seemed like flour and water.
The attorney, who had been handling special-needs adoptions since 1996, had never seen anything like it.
She and Susanna were determined to do something. After months of effort, they prompted government officials to remove the orphanage director and launch investigations. Some readers of Susanna’s blog would start the process of adopting more children from Katie’s floor, while others donated money for their medical care.
But before all that, the first order of business was getting Katie home.
After the first leg of the journey home, a flight to Frankfurt, Germany, Adam called Friedman at 3 a.m. Philadelphia time, warning that Katie’s oxygen levels had dropped somewhat.
An anxious Friedman got to the Philadelphia airport 90 minutes early, ready to take Katie to intensive care.
“I really had no idea whether she was going to arrive alive,” the physician said.
When Susanna, Joe, and Adam finally walked off the plane with their frail travel companion, Katie was indeed alive.
She was home.
A family that fits
At the house in Lancaster County, in the town of New Providence, everyone pitches in, from 18-year-old Joseph to 3-year-old Stephen. The kids handle breakfast, lunch, laundry, and yard work. And they dote on Katie.
Before her arrival, Joe and Susanna had met with the older children to see if they’d be OK with adding to the family. They were, and now that Katie is here, they feel no different.
“I would’ve thought it would be more difficult than it is,” said Daniel, 16. “I would say it’s only gotten better.”
By any measure, Katie seems like a different child. Her weight has nearly tripled, to 27 pounds, and she is 34 inches tall. The median for a girl with Down syndrome at that age is about 66 pounds and 47 inches.
The years in the orphanage were devastating for her development, on top of the delays associated with Down syndrome. She suffered from anemia, scurvy, and compression fractures of the spine. Her metabolism had shifted into ultralow gear, Friedman said.
“It defies understanding how she could’ve survived for nine years like this,” the doctor said, “but she did.”
“If we would write down all the issues that Katie has on a piece of paper, and you didn’t see Katie, didn’t see her face, just read her list of diagnoses, it would look scary on paper,” Susanna said. “But that’s not Katie.”
Who can say how much progress she will make?
For Susanna and Joe and Katie’s 10 brothers and sisters, the fact that she is here is enough.