Blessed by imperfection

By Mary Kaye Ritz
Advertiser Religion & Ethics Writer

Kyle Jonathan "K.J." Vu, 7, is autistic but very affectionate. "We're happy we were blessed with him," says his mom, Thuy Nga Le Vu. Photos by Rebecca Breyer • The Honolulu Advertiser

Dr. Kenneth Vu, whose son, K.J., is autistic, is a fertility specialist. He says sometimes the fertility industry gives couples a false sense of hope that they will have "perfect" babies.

Through it all, his father, Dr. Kenneth Vu, smiled proudly at his youngest, Kyle Jonathan, whose name means "a beautiful gift from God." Even if this gift came with its challenges: K.J. is autistic, and not all his days are good ones.

Bad days can start when K.J., 7, wakes up at 3 a.m., shouting and pounding and stomping his feet, demanding "I want car! I want car!" Only a long drive, winding through Waikiki, will calm him. One day he left a bruise on his mom's arm. A public tantrum once sent them from a restaurant before they'd finished dinner.

What makes Saturday's scene even more poignant is that it is playing out at Dad's Kailua office, a fertility clinic. Vu has two, one at Castle and one in town at Kapi'olani. Vu treats infertile couples. A few corridors away at this lab, an embryologist works with cells that — couples hope — will end up as "perfect" babies.

In a time when developments in reproductive medicine are threatening to outpace society's ethical considerations, Vu has learned that technology cannot create perfection ("science and technology don't change nature," he points out), and what nature has in store for us, perfect or not, can in itself bring great joy.

There are those who charge today's doctors have the capacity to "play God," to create "designer" babies. That makes Vu, a fertility specialist, such an interesting case study. He argues that parents should consider the limits of what can be done and the ethics of their choices.

As a reproductive medicine specialist, he diagnoses and counsels couples who have fertility problems. In some cases, eggs and sperm are fertilized in his lab and embryos are implanted in the mother. Still, he preaches caution.

"Sometimes I feel embarrassed about things we as a profession have done across the country," he said. "Yes, we support patients, but at the same time, (in some cases) we have given them false hope. The expectation is so great: 'We're going to have a perfect, healthy baby, right?' ... The industry has, in a way, made some patients feel they will not stop at anything."

The experience Vu and his wife, Dr. Thuy Nga Le Vu, a dental surgeon, had with their children shaped their point of view.

Their daughter Liz, 21, is now in Seattle, applying to graduate schools. Daughter Vicki, 14, is a Kalani High freshman, and Brittany, 11, is a sixth-grader at Wilson Elementary. All three have big, brown eyes, silky smooth long hair and bright smiles.

K.J. looks perfect, too. The round, sweet face. The big, squishy cheeks. Some people might think he's just misbehaving when an episode starts, and don't realize that his autism is hard to see.

He hasn't had a bad day for about three weeks. As Seventh-day Adventists, they thank God for that.

"We find out more day to day and we live, day to day," Vu said.

Today is a good day. Here in his dad's spacious office, K.J. can run around to his heart's content with four loving family members ready for his embrace.

"We're happy we were blessed with him," said Thuy Nga Vu. "We still are."

They're thankful that K.J. is affectionate, and even will extend his hand to be shaken when it's time to take his leave.

Some autistic children don't like much cuddling or human contact. Not K.J. When Mom used to go to the Mainland once a month to work, the rest of the family would pile onto the futon at bedtime. K.J. calms himself by stroking either his mother's long hair or that of his sisters when Mom is gone, rubbing it against his cheek and smelling it.

At one point during Saturday's visit, he climbs into his mother's lap. She pulls out the amber butterfly clip, letting her tumble of hair fall past her waist.

"He's been doing this ever since he was really young," she said. "I remember one day I cut my hair short, he wouldn't look at me. It broke my heart. From then on, I didn't cut my hair again."

Autism, a complex developmental disability, is a neurological disorder affecting brain functioning. An estimated one in 250 births results in autism, meaning about 1.5 million Americans have the disorder that comes with a wide array of symptoms, according to the Autism Society.

Scientists today are trying to learn the cause of autism. No one knows for sure, Thuy Nga Vu said, though she suspects hereditary connections.

Because they didn't know until he was about 2 that he was autistic, the family had to hit and break through two walls, oldest daughter Liz says.

First is the diagnosis, a day Liz recalls vividly.

She was 14 when the doctor sat Liz, her mom and Liz's two sisters down to break the news. She remembers crying.

The psychologist had told Vu earlier. He'd watched K.J. play on the floor and said, "Ken, he's autistic." Vu remembers that moment vividly, too.

The second breakthrough comes after you realize he's not going to "snap out of it," as Liz put it.

It means changes for the entire family. Liz recalled that soon after, her mother decided to stay home and her father cut back on his work hours.

"I know that having a kid with autism, with special needs, some families get torn apart," Liz said. "We became closer. It changed our values on what's important."

She's decided to focus on special education as a career, though her father didn't want her to feel forced to go into the field because of her brother, or to regret her choice.

She sees it as an opportunity.

"I don't think I'd be going into this if K.J. hadn't been diagnosed, but it's opened so many doors for me," Liz said. "It's almost a blessing. It brought me to something I really care about. ... It's really affected my life, but it's affected it for the better. "

Thuy Nga Vu now works to find the best education she can for her youngest son, fighting not just for him but for others who may not have the means or the ability or the medical know-how to navigate the complex educational waters for special-needs children.

And K.J. has made an impact on his father's work. Kenneth Vu finds himself going forward into the medical advances of his field very gingerly.

He worries about whether having some knowledge is always good. Say one of K.J.'s sisters learns that she carries the genetic markers that may mean she'll have an autistic child. Will that make her less likely to want children? Or if a future employer can discern which person has a higher likelihood of getting cancer — will that get weighed into the hiring decisions?

"I think having a child with a disability or disease is really changing my perspective on not only my personal but my professional life," Vu said.

"I'm sitting on other side of desk. I have empathy. I can see patients' side. It's difficult for patients to accept 'I don't know' (as a medical answer). Now as a parent of a patient, I see the effects of 'I don't know.' "

And it's affected his view of scientific advances: "I've learned to step back, be a little bit conservative, to think about the potential danger we may inadvertently place out there in the community."

Reach Mary Kaye Ritz at mritz@honoluluadvertiser.com or 525-8035.

Meet the Vus

Parents: Drs. Kenneth and Thuy Nga (pronounced Twee-na) Le Vu. Both are refugees who fled Vietnam during the war. They met at Loma Linda University's La Sierra College in California.

Children: Liz, 21, is a psychology grad in Seattle (applying to graduate schools in special education); Vicki, 14; Brittany, 11; and K.J., 7.

Occupation: Dad is a fertility specialist, Mom is a dental surgeon who now mostly stays at home to be with the children.

Dr. Kenneth Vu on ...

... The state of the fertility industry:

• "Technology and science has pushed to such point, maybe you won't get to the perfect baby, but (there are) some hereditary disease you can avoid."

... On pre-implantation genetic diagnosis, in which embryos are biopsied before implantation:

• "I do have concerns about some things we in the field have suggested. For example, PGD. Despite the fact that we have seven to 10 years of data, I always wonder about health of children 20 to 30 years from now."

... What he tells patients:

• "I take a deep breath, because I know I can't even guarantee they will conceive. (I say) 'I'm only here to assist you; we're not doing the work of God. We're not (making) miracles.' ... Only God can make a perfect baby."