clock menu more-arrow no yes

Filed under:


Four-year-old Amy Spencer doesn't really understand why adults make such a fuss over her.

There is no doubt she's a cutie. Her blond locks and shy smile are hard to resist.One could never tell by looking at her that she almost didn't make it into this world. The ones who make a big deal about her are those who know she was operated on in her mother's uterus to remove a life-threatening cyst.

"She's been real healthy. The only thing they (doctors) said she couldn't do is become a long-distance runner. That's probably the thing she'll aspire to do," said Sue Spencer, Amy's mother.

Amy might never run a marathon, but she's jogged the brains of the medical world. Dr. Steven L. Clark, who invented the procedure that saved the girl's life, said successful cases like Amy's move researchers to "push the frontiers of fetal medicine."

On this day, Amy is at a Provo hospital to be recognized as the new March of Dimes poster child for southern Utah. March of Dimes workers say it's nice to have a healthy poster child for a change. Amy might walk a little way in the 12-mile WalkAmerica fund-raising event April 27.

In a soft pink dress, Amy poses for a few pictures alone and with her mother. She doesn't know why she's there. All she wants is some candy.

"She's still young enough that she doesn't comprehend it. She knows she was really sick and Dr. Clark and other doctors helped her get well," Spencer said.

When Amy was born April 14, 1987, she was known as the "miracle baby" around the Utah Valley Regional Medical Center. Her grandmother, Lenore Kofford, still refers to her that way. Whenever someone comments about how adorable Amy is, Kofford said she has to tell The Story.

An abnormal collection of fluid was found in Amy's chest during a routine sonogram 20 weeks into Spencer's pregnancy. A more detailed sonogram by Clark showed Amy to be near death. Miscarriage was thought to be imminent.

But Clark had other ideas. With the approval of hospital administrator Mark Howard, Clark operated on the fetus. It was the first fetal operation of its kind in the world.

Clark inserted a needle attached to a tube 3 to 4 millimeters in diameter and 21 centimeters long through Spencer's abdomen and Amy's back into the cyst. When the needle was withdrawn, the fluid promptly drained. Within three weeks the problem was completely gone.

"The fetus tolerated this procedure well," Clark wrote in a published paper about the surgery.

Well enough to go home two weeks after birth by Caesarean section. Amy now goes to the doctor once a year for a lung test. Her last scheduled lung examination is next month.

Doctors have learned several things from Amy's case, Clark said.

While the operation that saved Amy's life was revolutionary, Clark said the procedure he invented was not the most important result. It will only help a few children. Cystic adenomatoid malformation associated with second-trimester hydrops is not that common. Clark said the surgery has been performed successfully a handful of times throughout the world.

"What Amy taught us is not to be afraid of knowledge," he said. The success of the procedure helps doctors take a bold and aggressive approach to fetal medicine.

"I think Amy is a real testimony to prenatal diagnosis," Clark said.

Clark said some have called such surgery "search-and-destroy missions." But conditions like Amy's that were once seen as hopeless will remain that way unless medical researchers develop new techniques and skills, he said.

"The field of fetal medicine continues to expand rapidly," Clark said.

The Spencer family is grateful it expanded for them nearly five years ago.