Wednesday, April 16, 2008

Sacramento Bee story on Jean Alex

Haitian infant has Sacramento neurosurgeon on his side
By Dorsey Griffith - dgriffith@sacbee.comPublished 12:00 am PDT Wednesday, April 16, 2008

He is just 3 months old, and already tiny Jean Alex Demosthene has a far brighter lease on life.
The Haitian infant, who arrived in Sacramento on Tuesday morning, will undergo neurosurgery today at Sutter Memorial Hospital.

The operation, donated by the surgeon and Sutter, will be phase one of a more complicated repair of a hole in his skull that has allowed part of his brain to squeeze out, forming a large bubble under the skin above his nose.

Called an encephalocele, the deformity can cause problems for children that extend far beyond any cosmetic concern.

The 13-pound tot came to Sacramento in the arms of 32-year-old Kim Smith, a Washington state mother of three and volunteer with the Medical Advocacy Team, a program of Remember International Inc., a nonprofit group linking children who have unmet medical needs with U.S. surgeons and hospitals willing to treat them without charge.

Smith learned of the child from Lori Moise, an American nurse who runs a clinic in Cazale, a rural village in Haiti north of the capital, Port-au-Prince.

"The parents had walked from Dessale, about an hour and a half away," Moise said, in a telephone interview from Haiti.
"They did not know what (the deformity) was. Some told them to kill the baby, but the mom couldn't do that."

In rural Haiti, Moise explained, facial deformities can be viewed as the work of the devil, a curse that can spell trouble, for example, for a pregnant woman who looks at the affected child.

"Some of the more uneducated people can't comprehend that this would be a medical condition," she said.

In this case, the infant's parents knew of another child whose cleft lip and palate were being repaired in the United States with the help of Moise and the Medical Advocacy Team.
Smith, who was planning a trip to Haiti to make arrangements for the adoption of a baby boy, agreed to bring Jean Alex home and then to Sacramento for the surgery.

Smith paid all of the travel expenses herself; her husband, a police officer, is off-duty for a few days watching their children.

On Tuesday, Smith sat in a rocker next to the hospital crib, feeding a hungry Jean Alex from a bottle as the infant looked up into her friendly, if still unfamiliar face.
Smith said she will take care of the baby until he is well enough to return home with another of the group's volunteers.

An immediate concern is the spinal fluid that has started leaking from the bubble, leaving Jean Alex highly vulnerable to life-threatening infections such as bacterial meningitis.
Today, Dr. Sam Ciricello will insert a shunt into his brain, to relieve pressure and drain the accumulating fluid.

The shunt, most likely permanent, will empty the excess fluid into his abdomen.
The shunt surgery should allow Jean Alex to heal to the point where his encephalocele can be surgically repaired, probably in a few weeks.

Ciricello said that operation involves opening the skull, sealing off the sac of fluid inside the brain, and then repairing the open space in the skull with new bone.

Ciricello said these kinds of "neural tube" deformities tend to show up more often in infants whose mothers lacked prenatal care or did not take folic acid, the B vitamin that helps prevent birth defects during pregnancy.

Also, in more industrialized countries, severe brain abnormalities are typically detected early on, when pregnancy can be safely terminated, he said.

Although the deformities can be repaired, Ciricello said Jean Alex and others like him still face possible complications including seizure disorders, vision problems and learning disabilities.
Regardless, Smith, Moise and others helping these children hope Jean Alex can be an example of hope in a place where others like him have not been as lucky.

For information on the Medical Advocacy Team or to make a donation, go to