Instructor Aids Young Kosovar Refugee with Heart Deformity
Last April, Melissa Perry, instructor in the Department of Environmental Health, received an e-mail from Yugoslavia that changed her life.
The message was from Driton Bajraktari, a Kosovar friend whose daughter, Mjalta, was approaching her first birthday and was not developing well. The baby was tiny and listless, unable to achieve milestones such as rolling over from her back to her stomach. Doctors thought there was something wrong with her heart. To make matters worse, Driton Bajraktari and his wife, Leonora, were living in a province of Serbia that had been decimated by the effects of war in 1999. Medical resources were scarce, and doctors were unable to treat the little girl.
Perry answered her friend's e-mail, "I want to help with Mjalta. Do you want to come here? I don't know what we have to do to make it possible, but I will do whatever I can to help."
Five
months after replying to the e-mail, Perry greeted Mjalta and Leonora
Bajraktari at Logan Airport in Boston. She escorted them to Children's
Hospital on Longwood Avenue, where Mjalta began treatments for the next
several weeks.
Recently, Perry and Leonora sat in Mjalta's hospital room and recounted
the story of friends working together to save a little girl.
In early 1999, the Bajraktaris were living in Pristina, Kosovo and were increasingly threatened by advancing Serbian troops. Driton and Leonora were looking forward to the birth of their first child who was due in a month. But the couple was soon to be temporarily separated. As Albanian Kosovars, they were told by Serbian troop leaders to leave the province. Driton fled to Macedonia with male relatives while Leonora, 21 years old and eight months pregnant, traveled in a car with seven other family members to Albania.
"I was frightened, of course," said Leonora. "I hadn't eaten in two days. I started to think that the stones were potatoes."
She settled down in an unfamiliar country and stayed in touch with her husband through an uncle in London. The pair was reunited in Albania shortly before the birth of their baby girl.
Mjalta was delivered at 8 a.m. on May 18, 1999 and weighed less than four pounds. Her lips and eyelids were black and her skin was blue, signs that insufficient oxygen was circulating in Mjalta's bloodstream.
"The doctors knew that she had a problem with her heart," said Leonora, "but they didn't know what it was."
Leonora took her daughter to a refugee camp in Albania where French doctors suggested the problem might have been a lung defect, but they could do nothing more. Soon after, the Bajraktaris met Perry, who had traveled to Albania in the summer of 1999 as an unpaid volunteer to aid victims of the Serbian conflict.
"I had epidemiological and public health skills," said Perry. "I thought that I could at least assist in an infectious disease crisis."
On June 21, 1999, a cease fire agreement in Kosovo was reached, and the Bajraktaris returned to Pristina, Kosovo to rebuild their lives. Perry went to Kosovo as well until August 1999, when she returned to HSPH.
The story may have ended there if not for another disconcerting diagnosis made at a hospital in Pristina. In addition to possible defects in her heart and lungs, Mjalta seemed to have Down's syndrome. The doctors were uncertain and ill prepared to care for Mjalta if they were proven right.
"I told my husband to look for Melissa," said Leonora. "Maybe she can help."
Driton sent Perry his e-mail asking for help. At the time, Mjalta was nearing her first birthday and weighed less than 13 pounds.
"I knew if there were anyplace Mjalta could get the help she needed, it was here," said Perry. "I had no idea what we had to do to get a medical visa or how we would pay for the surgery, but I had strategies and started to contact people."
Perry called Children's Hospital on Longwood Avenue, which offers an extensive program specifically to help babies with Down's syndrome. She had Mjalta's medical reports faxed and translated into English. She secured a medical visa for Leonora and Mjalta and learned that they qualified for Massachusetts' public health insurance program because they are considered refugees.
When Leonora learned that Mjalta could receive the medical care she needed, she was thrilled. "I was praying always that Mjalta would be all right," said Leonora. "I was so happy when I knew she would be okay."
On September 12, Leonora and her daughter arrived in Boston. Mjalta underwent evaluations at Children's Hospital and was diagnosed officially with Down's syndrome. The doctors confirmed that she had perforations in the walls that separated two of the chambers of her heart, a condition common to children with Down's syndrome that is usually corrected surgically before six months of age. At 18 months, Mjalta had struggled one year longer than most with her condition using half of the capacity of her heart to pump blood through her body.
"The pediatrician who evaluated her was so moved that her heart was still unrepaired that he asked his colleagues to make a pact to do whatever they could to help this little girl," remembered Perry. "He said she needed a lot of help and had a long way to go."
Since her diagnosis, Mjalta has successfully undergone surgery and has gained two pounds during her hospital stay. She is an alert little girl who is quick with a smile and a giggle, and Leonora has been learning to work with Mjalta to develop her language and motor skills. In December, mother and daughter will return to Kosovo with luggage cases stuffed with high-calorie formula, diapers, and plush toys.
Perry, who drove Leonora between the hospital and her own apartment almost every day, said she was deeply involved due to the support of her work colleagues, especially her director David Christiani.
She also applauds the doctors and nurses at Children's Hospital who have been unfailingly helpful, she said.
"No one hesitated to respond to the needs of this child,"
said Perry. "I am grateful to be in this medical environment with
so much expertise and technology."
