Profile Story - Ectrodactyly

Story & Photo By: Alyson Svec

Born with lobster claw hands and feet, Jessica Montez, a 21-year-old advertising major at Texas State University does not let this condition put a hold on her life.

Ectrodactyly is a rare birth defect that causes malformation to the hands and feet. Montez has middle digits missing, while the rest fuse together. All related to genetics, this condition occurs about once in 90,000 births.

Her father, Jesse Montez, 55, started the first generation in his family during the late fifties. His mother, at 45, took the pill Thalidomide to cure morning sickness, which caused these birth defects.

“We discussed with the family that we felt that this was the Ectrodactyly, Ectodermal Dysplasia, and Clefting Syndrome (EEC). It is autosomal dominant with variable expression with perhaps lack of penetrance in some families.” said M.D. Lillian H. Lockhart.

The most common type is linked to the mutation of the seventh chromosome.

There are no preventions, although several treatments can make the hands appear normal, while still functioning differently than others.

Although Montez has this condition, she appreciates being this way.

“I believe everything happens for a reason, so I’m happy I have this because I am unique,” said Montez.

During school, she feels different from other students in her classes.

“Everyone else seems so fast paced. I am used to doing everything slower,” said Montez.

Montez is a perfectionist at heart. She focuses more on her studies, since she knows it will take her longer to complete. Her mental development is slower, but she feels she has matured well.

Typing and writing is no challenge to her. She learned where all the keys are and can type at a decent pace. She also receives notes from her professors instead of writing them.

Cody Lindemann, a 20-year-old student, believes Jessica fit in well with others during school.

“She was in my class for a whole semester and I didn’t even notice she had three fingers on each hand,” said Lindemann.

He believes she is a normal human being just like everyone else.

In a similar situation, it took six months before her father’s coworker noticed his hand condition.

Whether televising sewer lines in Austin, delivering newspapers in La Grange or doing manual labor as a crew leader, he still handled each task offered to him.

“I felt normal. A lot of employees treated me like a real person,” said Jesse Montez.

Although teased throughout the years, Montez does not care what others think of her.

“Take a picture, since it will last longer. I’m sure you’ve seen worse than me,” said Montez.

Some of the challenges she faces are walking on campus, running, buttoning her clothes, and opening items.

Seeing it as a blessing, her father believes being born without all his fingers is not a challenge, because he never misses something he never had.

“I have a thumb, so at least you can still hitchhike,” said Montez.

He still challenges himself though. Snapping his fingers took five years to learn.

Numerous side effects are linked to Ectraodactyly including abnormalities of skin, hair, teeth, nails, and sweat glands as well as cleft lip, limb defects and hearing loss.

Montez has one enlarged kidney, so she makes trips to the restroom every hour, and always goes before and after class. She was also born with no wisdom teeth, uneven hips, and no tear ducts.

“She had it rough sometimes. People stared at her, and I was overprotective at times, but I just want the best for her,” said her mother, Wanda Montez.

Since she has no arch in her feet, she has trouble keeping balance. Her doctor broke her toes and put pins in them when she was younger to straighten them out since they did not bend. Montez wears different sized shoes because of her toes.

Those who have Ectraodactyly or have children with the condition are at increased risk for passing it onto future children.

“In each of their pregnancies they would have a 50 percent chance to have a child that would receive the gene,” said Lockhart.

Montez is concerned about the future when she is ready to start a family.

“When I have kids, I wonder how their genetics may turn out,” said Montez.

Besides her struggles, she can still play sports and get involved with numerous activities.
Because of the way her hand is shaped, she is good at catching a ball, hitting volleyball over the net and playing pool. She also enjoys bowling, watching television, and making collages.

Some benefits of having this disability allow her to register sooner for classes, park closer to campus, and have extra time on her tests.

When Jessica and her father play pool, the bump between their hands helps them hold a pool stick better.

“You have the perfect hands for pool,” said a friend of the father.

People in the bar used to call her father an alien, three fingers, and a frog, but he joked with them, and realized they will not hurt him.

He believes there are fewer fingers to worry about when doing certain tasks like painting nails.

“If you have less fingers you should get a discount on a pedicure,” said Montez.

Montez has an interest in learning more about her condition. As she gets older, she realizes new information arrives over time, so she learns more every day.

She said, “Why fit in when you were born to stand out?”