Megan's Story

Megan's Story

It wasn't exactly an honor.

Megan Foe named one of her dolls after her doctor at Phoenix Children's Hospital - then proceeded to deliver a vengeful poke to the doll's arm with a make-believe needle.

Until six months ago, Megan never smiled at the doctor, whom she associated with the blood draws she endured every time she visited the Hematology Clinic at PCH.

"She was traumatized," her mother, Suwini, explained. "She was getting poked all the time."

But now Megan has grown accustomed to the clinic and to the complex treatment that keeps her alive. The look of angry distrust that once greeted her doctor has been replaced with a shy smile, and Megan offers her arm easily for the now-routine blood draws.

Megan has thalassemia, a genetic blood disorder similar to the more familiar sickle-cell anemia. Children with thalassemia, also called Cooley's anemia, do not produce an adequate amount of hemoglobin, the oxygen-carrying substance in the blood.

Treatment involves regular blood transfusions to keep the hemoglobin level near normal. Without treatment, the spleen, liver and heart become enlarged, bones become brittle, and facial bones become distorted. Life expectancy without treatment is about 5 years.

Megan was diagnosed with thalassemia at 5 months, although her parents suspected before her birth that she might have the disorder. During Suwini's pregnancy, low iron levels in her own blood led doctors to discover that she was a carrier of the disease. Tests showed that her husband, Antoni, was also a carrier, which meant there was a 25 percent chance that their baby would have the disease. Megan's older sister, Hannah, does not have thalassemia but is a carrier.

Because of risks involved in treating very young infants, Megan did not begin having blood transfusions until she was 13 months old. In the meantime, doctors carefully monitored her condition to make sure her hemo-globin did not drop to a dangerously low level. Though her life was not in danger during that time, Megan was listless and pale for the first year of her life. Her mother recalls the dramatic transformation that occurred after Megan's first blood transfusion.

"It was like suddenly she woke up," Suwini said. Megan's pale skin took on a rosy cast, her energy level increased, and she took a new interest in eating. She began sleeping well for the first time in months.

Before the transfusion, her mother explained, her body's effort to make blood had caused her to sweat a great deal at night. "She would wake up soaking wet," Suwini said. Treatment brought an immediate end to the fitful nights.

Now Megan comes to the Hematology Clinic about once every four weeks for a blood transfusion. The family has five designated donors, mostly close friends, who have volunteered to give blood on a rotating basis for Megan's treatment.

But the transfusions bring their own risks. Repeated blood transfusions cause iron to build up in the body, which can damage the heart, liver and other organs. To prevent iron build-up, a drug called Desferal is given to help rid the body of excess amounts of the mineral. The drug is administered through a small pump, about the size of a calculator, that works while the child is sleeping.

Five nights a week, Megan's parents hook her up to the pump through a syringe placed just below the skin in her stomach or thighs. A topical anesthetic called EMLA cream makes the procedure painless.

"Do we do stomach or thighs?" Megan will ask calmly as her mother begins gathering the necessary supplies at bedtime. Though only 2 1/2, Megan knows many of the medical terms that accompany her disorder, and she has little patience with baby talk that might be used in an effort to bring a conversation down to her level.

One night Suwini referred to the "magic cream" she was about to spread on her daughter's skin. "It's EMLA cream, Mom," Megan corrected.

Before Desferal was introduced in the 60s, life expectancy for treated thalassemia patients was about 20 years. Now patients are living longer than ever, and Megan's parents have reason to hope that she will live well into adulthood.

"We have seen people in her condition with children," Suwini said. "She will probably live longer than us."

The Foes have taken the advice of a psychologist who suggested, "Have a positive attitude, and she will always be positive." The strategy has worked.

"She takes this so well, and we are so touched," her mother said.

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