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Minggu, 18 Maret 2012

A Fragile Child Brings Her Parents a Strong Marriage Williams Syndrome, Their Child’s Disorder, Mobilized the Kievs

WHEN Chloe Kiev broke her arm on the monkey bars at Coleytown Elementary School in Westport, Conn., her parents were asked if they planned to sue. Those who have watched the marriage of Johanna and Marshall Kiev mature were not surprised at the response.
“No,” Mr. Kiev said. “We’re going to get a better playground.”
The couple called the school and asked officials what would be involved in replacing the playground. “We said we would provide the funds and they had to do the hard work of designing it and making sure it was safe for the kids,” Mr. Kiev said.
Their approach to Chloe’s accident in 2010 was an example of their approach to their life together, which has offered far greater challenges than a broken arm. Chloe, now 6, was diagnosed at birth with Williams Syndrome, a rare genetic disorder characterized by severe colic and vomiting in infancy, heart problems, developmental delays and other challenges. Chloe required heart surgery when she was 6 weeks old. She refused to eat, and would only drink a bottle as she slept.
She now eats heartily and sleeps like a typical 6 year old, Mrs. Kiev said. The Williams Syndrome is most evident when Chloe gets up. “She moves more slowly than other children and is less coordinated,” Mrs. Kiev said. “She will come out and be unsure what direction to go in.”
A day after their daughter was born, Mrs. Kiev was resting in her hospital room when the cardiologist stopped in. “Marshall had gone home and I was alone, and the cardiologist asked me if I had heard of Williams Syndrome, and my heart started to thump and I said to him, ‘What does that mean?’ ” She called her husband immediately.
“The scare of the heart problem was a huge hurdle, and I knew she was going to need surgery, and then the Williams Syndrome,” she said. “I was trying to keep it together, but I had to put the doctor on the phone with Marshall because I could no longer talk.”
But Mrs. Kiev had so many questions. “I asked myself, how am I going to have a conversation with her?” she said. “How will I prevent her from having other people make fun of her? I feel like this whole process has been an education for me, because I was never, ever, exposed to anyone at any age with special needs. And now I see how smart she is, and that she is just missing a link that will prevent her from reaching her true potential.”
Mr. Kiev, who grew up in Saddle River, N.J., was rattled by the more immediate problem of Chloe’s heart.
“I said, ‘Let’s not even focus on the Williams, let’s talk about the heart issue, that it could be life-threatening,’ ” said Mr. Kiev, 43, an executive and member of the management team at SAC Capital Advisors, a hedge fund in Stamford, Conn. “It took my breath away.”
With an older child, Eddie, now 9, to care for along with Chloe, the couple persevered. Mrs. Kiev took the 12-week maternity leave her company offered. The couple then hired a baby nurse around the clock for the first few months after she returned to work to help tend to Chloe’s needs. A baby sitter cared for Eddie during the day. Mrs. Kiev stayed up with Chloe most nights to try to feed her. “She had to fall asleep, which was difficult, then drink the bottle while she was asleep, and then she would wake up. We barely had time to do anything else.”
The couple had the financial resources to hire plenty of help, but their fear, exhaustion and confusion was the same as any other family facing a health challenge regarding a child. After Chloe’s early heart surgery, her sleeping and eating issues remained a significant challenge for two and half years.
“We were taking it one day at a time,” Mr. Kiev said.
Then Chloe began to eat and sleep. “I remember when she started to improve, and we felt like it was a light at the end of the tunnel, that we had made it through,” Mrs. Kiev said.
They then took some small steps toward trying to solve some of the heart issues associated with Williams Syndrome.
“I think we approached Williams in the same way we approach life,” Mr. Kiev said. “We said: ‘Are we going to sit around and accept it, or are we going to do something about it?’ ”
Mrs. Kiev, 38 and an asset manager in the White Plains office of Rockwood Capital, a real estate investment firm, said her husband’s gregariousness, networking skills and resourcefulness came in handy. “He is unbelievable in a difficult situation,” she said, noting how he sprang into action when she became stranded in Newfoundland on 9/11 while flying back to the United States from France. “He immediately reserved a rental car for me so I could drive back to the U.S. He is always thinking about the next step.”
Mrs. Kiev, who grew up in Le Raincy, France, picked herself up and moved to New York at age 20, has strengths that complement her husband’s. An inner grace and sweetness accompany a dogged attention to detail. The couple began talking with scientists and academics. They formed the Kiev Foundation to help finance study of the disease. They arranged and helped pay for a symposium at Yale in May 2008 devoted to cardiovascular issues related to Williams Syndrome. The foundation awarded Yale a substantial grant in 2009 (renewed this year) for research.
Then they learned of the Seattle-based Allen Institute for Brain Science, a nonprofit medical research organization, and the Williams Syndrome Association in Troy, Mich. They helped bring the groups together for another symposium, but all along, they credit just about everyone else with the groundswell they created.
“We got to meet some unbelievable people who we never would have been able to meet otherwise, and they are just wonderful,” Mr. Kiev said. “We showed up and said, ‘We want to fix the heart issue with Williams,’ and they found out it was to help a child and that it was a medical issue, and that was it.”
In late 2009, the Kievs hosted a cocktail party at the Marlborough Art Gallery in Manhattan for those who had become involved with their efforts. About 200 people attended, and without being asked, most wrote checks to the foundation.
Such efforts could drain the life from a marriage, but the Kievs say they have grown to appreciate each other even more. Mr. Kiev remains as enchanted with his wife as he was on their first date.
“Back then, we got to the restaurant and instead of ordering a cocktail, she ordered a whiskey,” he remembered. “Then the dinner menu came and she asked to see the dessert menu. She said, ‘If the dessert looks good, that will determine what I eat for dinner.’ It’s an inner grace she has that makes me laugh; it’s so great.”
Now, he comes home to witness her in their family room, dancing with the children. “Jo brings this joy to our lives,” he said.
Mrs. Kiev mentioned a few years ago the idea of having a third child. The couple had undergone genetic testing beforehand.
Mr. Kiev asked her, “Do you think our plate is full?” to which Mrs. Kiev responded, “Let’s get a bigger plate.”
The likelihood that another child would have Williams Syndrome was slim, and Mrs. Kiev was tested throughout her pregnancy for any other possible genetic abnormalities. Almost one year ago, a healthy son, Ben, was born to them.
Mrs. Kiev sees her husband as the creative side of the family. He took Eddie tubing when he was 5, before she was ready to allow him to do anything of the sort, and cajoles her into adventures in which she later rejoices. “Marshall is so very loving and caring and funny,” she said. And despite all the demands, Mr. Kiev said: “We make sure we’re still in touch with one another. We make time for each other.”
They are solidly a family, scrambling each morning — with the help of a nanny whose own children are grown — to get the older children to school and themselves to their jobs, and arriving home each evening to what Mr. Kiev calls “controlled chaos.” Mrs. Kiev plans outings for the family on the weekends, and they travel, although not as often as when they were just a couple with fewer responsibilities and more free time; to France to visit Mrs. Kiev’s family and, recently, to Florida for a vacation.
Chloe’s issues have been absorbed into family life. Her condition offered another attribute, almost predictable for a couple like the Kievs: the syndrome bestows on its carriers an unusual friendliness and embrace of friends and strangers alike. “She’s just a ball of joy all the time,” Mr. Kiev said.

Sources: NYtimes.com

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