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Stacy Cunningham doesn’t remember her earliest claim to fame. Born with orbital hypertelorism—an increased distance between her eyes—Cunningham ended up as the March of Dimes poster baby in 1967.

Now, more than 40 years later, Cunningham has taken on the position as the Alaska spokesperson for the March of Dimes, in the hopes that by sharing her story she can raise awareness of birth defects and ways to prevent them.

“The three biggest weapons against birth defects and premature births are prevention, education and research. And that’s what the March of Dimes does,” she said.

When Cunningham was born in 1966, major reconstructive surgery was not being done on children. As a 6 year old, she did have surgery to remove some skin tissue, but she grew up knowing she would need more surgery as an adult. Now 43 and with two more major surgeries behind her, Cunningham still needs three more surgeries, which she hopes to have done by the time she’s 45.

GROWING UP

One of Cunningham’s earliest memories is of flying down to Seattle with her mother for surgery at age 6. She remembers meeting other children with birth defects, including a girl with a heart condition. Fourteen years later, when she was going to school in Washington, she ran into the same girl, and they recognized each other—“She still had her scar from heart surgery,” Cunningham said.

Sometime between the ages of 4 and 6, Cunningham remembers figuring out that she looked different from other kids, and getting asked about why she looked the way she did.

 “I’d usually say ‘it’s the way I was born,’ or ‘it’s the way God made me,’ because when I was growing up that’s what family members would say,” she said.

Cunningham wonders if her life might have been different “if there would have been someone like me or someone who looked really different on Sesame Street when I was growing up and other kids could have seen it,” she said.

“I don’t think kids are cruel… just uninformed,” she added. “I think adults can be crueler in may experience.”

All the same, the hardest part of her childhood had to do with surgery, not with the responses of other kids. She doesn’t think she wasn’t teased any more than someone with glasses or freckles would have been, and she had many good friends growing up.

Cunningham credits her happy childhood largely to her parents and the community of Juneau.

“I was really lucky to have been born here,” Cunningham said. “I had an amazing family. I was never treated any different by my family. All the same expectations. There was never any sympathy.”

At the same time, despite living a relatively normal childhood, future surgery was still looming in the distance.

“Here was this little kid who had had surgery, who had had all these traumatic experiences and that kind of carried with me too,” she said.

And that 6 year old’s fear was still present when Cunningham went to have surgery as a 20 year old, she said. She couldn’t go through with it. She laughs now about choosing to go play Bingo instead—she even won $400.

LOOKING DIFFERENT

So Cunningham went on with her life. After a short stint studying cosmetology in Washinton—“I saw what lice looked like under a microscope and said, ‘I’m out of here,’” she recalled—she returned to Juneau, and has been living here ever since.

Failing eyesight finally led Cunningham to undergo more surgery as an adult. Legally blind in one eye, and with astigmatism in both eyes, she really needed to be able to wear glasses, which without surgery wouldn’t be able to rest on her nose.

So at age 41 she had nasal reconstruction (soft tissues only) and eye muscle surgery. The doctor also decided to give her a chin implant, but it ended up being in the wrong place.

During the surgery she at times felt like a guinea pig, she said.

“You’re in a room with all these different doctors and they’re talking to each other,” she said. “It’s like, ‘Yoo hoo, patient here. I’m a person. I’m the person it’s being done to. Speak to me.’”

Then, in 2008, under the care of a different surgeon, she had an orbital osteotomy, which entailed removing her forehead, cutting all the bone around her eyes loose and moving everything in an inch. She also had a nasal reconstruction using bone graft from her skull, and additional bone grafts in her chin.

She described her healing process as “like constantly feeling like you just left the dentist.”

And she’s still getting used to looking different. After each surgery, the first time she saw her reconstructed nose in the mirror, she was shocked.

“I wasn’t expecting to look so different,” she said. “I’m probably still getting used to it in some respects. I’m going to continue to still get used to it.”

Then again, she said some of her friends didn’t even notice a difference in her appearance after her surgery. And that’s fine with her. The most important parts of her, after all, haven’t changed.

“To completely change how you look, you really have to know who you are on the inside,” she said. “I think it’s being comfortable as who I am, too, as a person.”

SPEAKING OUT

Cunningham’s mother was always active in March of Dimes, and this year she decided it was time for her to get involved as well. Cunningham describes herself as a shy person who doesn’t like to draw attention to herself, so she surprised her friends when she ended up as the state spokesperson.

“After going through what I did go through, as far as having that major surgery, and thinking about little kids having it…  I just wanted to help out in any way,” she said.

From its beginnings as an organization founded by  Franklin D. Roosevelt to fight polio, March of Dimes has widened its scope to work on improving the health of all babies by preventing birth defects, premature birth, and infant mortality.

Cunningham noted that Alaska has a higher than average rate of birth defects. According to March of Dimes statistics, 5 percent of Alaskan infants are born with a major structural birth defect.

“I would love to see there be an end to most birth defects,” she said.

Cunningham hopes that by sharing her story she will be able to increase community support for the research and projects that March of Dimes makes possible.

“You never know when it’s going to happen to someone you know or someone in your family,” she said.

The March of Dimes walk in Juneau will be held 9 a.m. Saturday, May 1 at the Dimond Field House. Registration forms are available at A&P or online at www.marchforbabies.org.