'Dwarf': Undergoing Controversial Lengthening Surgeries

ABC News
'Dwarf': Undergoing Controversial Lengthening Surgeries
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'Dwarf': Undergoing Controversial Lengthening Surgeries (ABC News)

Tiffanie DiDonato said everything she has ever wished for has come true: a handsome husband, loving friends and a new baby. But most of her childhood dreams play out in simple, everyday victories, like taking out the trash or driving.

DiDonato, 32, was born with diastrophic dysplasia, a rare form of dwarfism. The condition left her with a "typical size" torso, but abnormally short arms and legs. By the time she was in middle school, she was around 3-foot-6.

Growing up in Marlborough, Mass., DiDonato fantasized about being tall enough to grab something off the grocery store shelf, cook on the stove, take out the trash and drive a car, but almost everything was out of reach.

But that all changed when DiDonato endured an excruciating and controversial series of limb-lengthening surgeries, which breaks bones and forces them to re-grow longer. It was a decision she made when she was very young, knowing that it would have risks and rewards with a lifetime of consequences.

At age 8, DiDonato had her first surgery to lengthen her arms and gain four inches of height.

"When I woke up, when it hurt so much, you freeze it, almost like if you scream it is going to hurt worse," she said. "All you can do is kind of let the tears fall and deal with it and suck it up and let it ride."

When she was 15, DiDonato decided to have the surgery again. Ignoring the recommended maximum of four inches, she and her doctor decided not to put a cap on her growth. Her mother, who raised her to be a fierce fighter, said she supported her daughter's decision.

"It was all about independence," Robin DiDonato said. "It was doing things on her own, brushing her own hair. My biggest fear was her being dependent on others for her care because, let's face it, Gerry and I won't be around forever."

PHOTOS: Tiffanie's Transformation Before and After Surgery

Her father, Gerry DiDonato, said he told her she didn't need to have the surgery, and it was torture to him to watch his daughter suffer.

"It was very nerve-racking," he said. "She would cry it out. It was tough … it's horrible."

But Robin never wavered. She said she didn't let herself cry in front of her daughter, even during the most gut-wrenching days.

"I was not going to because if I broke, maybe she would have too, maybe she would have stopped," Robin said. "Who knows what she would have done. I think she needed me to be strong for her."

After her second surgery, Tiffanie DiDonato gained an unprecedented 10 inches of additional height, putting her at 4-foot-10 -- right on the cusp of little-person status. She kept a journal, which she said helped her get through the painful process.

"I was honest with myself, if I wanted to die, if I felt like that's what I wanted to do, then I wrote it down," she said.

Her journal was turned into a memoir she defiantly titled "Dwarf." In it, DiDonato chronicles her "no pain, no gain" view of life and how surprisingly grateful she is for the experience.

"If you go through a struggle, if you know what sacrifice is, and you have felt a little pain, it makes you that much braver," she said. "It makes you a little bit more aware."

DiDonato is now married to Eric Gabrielse, a nearly-six-foot-tall Marine, and they recently welcomed a baby boy.

"She's so powerful and strong," Gabrielse said of his wife. "Being in the military, you need somebody that one, can be independent, but two, can be extremely supportive and because everything she's gone through, she's been through her own battles, so she knows exactly how to support me through mine."

Controversy Around Lengthening Surgeries

We first met DiDonato four years ago when she and Gabrielse were about to tie the knot. After her story aired, she caught flack for her lengthening surgeries from critics who said The Little People of America organization doesn't support the risky procedures.

Reza Garakani was also born with dwarfism and said he regrets that his father pushed him to have the lengthening surgery back in the '80s. He was 12.

"I did not want to undergo the painful procedure which, in my mind, I was worried that, what if this fails," he said. "For a few inches, I didn't want to damage my life. I was happy with who I am."

Unlike DiDonato, Garakani said the surgery left him paralyzed.

"Because of this procedure, I lost a major part of me," he said. "Before I was just an average dwarf. I could run around, I could play sports, I could swim and do things. Now, I can't do what I was able to do. I would have rather been three feet tall than be a few inches tall with all the complications."

Even DiDonato's father, who still has mixed feelings about the surgery, said it may have taken a physical toll on his daughter.

"Personally, I feel she lost a little mobility with the extreme lengthening," he said. "I'll always remember her with her little jeans on chasing a ball, but she feels good about herself and that's the most important thing."

But DiDonato said she was well aware of the risks from the start and has no regrets. It seems to have paid off. Being a new mom and the wife of a Marine, she seems to personify the Marine's fighting philosophy: Adapt and overcome.

"Having a baby, every day I'm adapting and overcoming, but I kind of feel like that's for every parent," she said. "Every mom, every dad, you have to take the punches as they come."

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