KANSAS CITY, Mo. — Jennifer Bertrand celebrated two of the most joyous moments in her life in August 2008. She found out she was pregnant with her first child and two days later won HGTV's "Design Star." But this year both turned bittersweet.
Her future with the Home and Garden Television network is in question, and her 7-month-old baby's health is in jeopardy.
Winston — the Bertrands' only child — was born Feb. 20 with lymphatic and venous malformations in his neck, face and chest that create large and small masses in his cheeks and jaw line. The cysts make his tongue protrude, swell and bleed, and they also obstruct his airway. Nourishment comes from a feeding tube. His tiny clothes have holes cut for access. A tracheotomy tube helps him breathe.
"He's the loveliest, cutest baby ever," Bertrand said as she held him close to her in the Olathe, Kan., home she shares with her husband, Chris. "Of course, I'm biased."
During the third season of "Design Star," the former elementary school art teacher became known for her bubbly personality and down-to-earth approach to design.
Bertrand's pregnancy delayed production of her own television series on HGTV, the prize of "Design Star."
Five months into her pregnancy, an ultrasound detected what seemed like a tumor on her baby's neck. Following the delivery, a team of 20 doctors and nurses performed surgery to open his airway and help him breathe.
Winston spent seven weeks in the neonatal intensive care unit at the University of Kansas Hospital. Now that he's at home, a nurse and the Bertrands monitor his airway around the clock and look for potential bleeding. Nurses are in the home every day, though they leave the family alone for some of the day on Saturday.
"We want some normalcy," Bertrand said.
There was a close call July 5 as Chris and the day nurse were changing Winston's tracheotomy tube. He gasped for air, and blood shot out from the hole in his throat. Jennifer called 911 while Chris and the nurse performed CPR on Winston, whose tiny body became blue. By the time paramedics arrived, Winston started breathing more regularly. Medical professionals think tongue bleeding might have obstructed his airway.
Every six weeks, the Bertrands fly to St. Luke's-Roosevelt Hospital Center in New York, one of only a few medical centers in the country that treats malformations as complex as Winston's. He undergoes sclerotherapy, a nonsurgical procedure in which a needle containing doxycycline or bleomycin is injected into the cysts. As a result, the cysts shrink, but the lymphatic fluid travels to cysts in other parts of Winston's body.
"It's kind of like squeezing a balloon," Bertrand explained. "The air — in this case, fluid — goes somewhere else."
Untreated, Winston could grow up with major problems or even die.
"His face would be severely disfigured; he wouldn't be able to talk, eat or breathe normally," said Milton Waner, a pediatric facial plastic surgeon and one of Winston's doctors at St. Luke's-Roosevelt.
But with sclerotherapy and reconstructive surgeries, Winston might be able to look and function close to normal, Waner said.
The Bertrands moved Winston's small nursery into the finished basement, a larger space that allows the family, on-duty nurse and medical equipment to be close to Winston. A humidifier emits a loud hum and a heart and oxygen monitor beeps.
Currently, Winston doesn't make much noise — a squeak here and there or a sound similar to an untuned radio station from his tracheotomy tube.
"Some parents would see the no-crying thing as a pro," Bertrand said with a giggle. She laughs often, she said, because it helps her get through stressful times.
Wanting real design
Bertrand kept Winston's complications private until this summer as she was getting ready to tape her five-episode series "Paint Over," which has since been canceled.
"I didn't tell (HGTV) — not because I was ashamed of anything — but because I wanted to prove to them and everyone else that I can still carry on, even with all that was going on," Bertrand said. "Winston is my first priority, but I was able to show that even in the midst of utter chaos, it's possible to pick yourself back up."
The network didn't grandly promote her series on air as it did the ongoing shows of other "Design Star" winners. "Paint Over" ran at 3 p.m. Monday through Friday the first week of September, a time slot that didn't offer an opportunity for a wide audience.
Many interior designers — often critical of television makeover shows — considered the series refreshing and substantive. Bertrand transformed rooms in the homes of families who had experienced difficult but common challenges, such as cancer, divorce and retirement.
"I thought the designs looked great, and she was natural and genuine," said Sara Noble of Noble Designs in Olathe, Kan., who doesn't know Bertrand. "I watched it because she was a local winner, but I wasn't prepared to necessarily like the show just because of that."
Bertrand is proud of "Paint Over" and hopes to tape more episodes.
"I know I have a unique hosting style that is appealing compared to what can sometimes appear to be plastic hosts," Bertrand said. "I want to do real design for real people. And I definitely want to be on television."
For now, though, HGTV has pulled the plug on the show.
"While that's all the episodes of the series that we plan to produce at this time, it doesn't preclude us from working with Jennifer in the future," said Eddie Ward of Dera, Roslan & Campion Inc. Public Relations in New York. "We evaluate many factors, including fit with long-term programming strategy, before making decisions about the future of any HGTV series."
Help from friends
Friends are rallying around the Bertrands during this difficult time, some helping in extreme ways. Seasoned marathon runner Chris Justice of Boulder, Colo., formerly of Lee's Summit, Mo., ran 24 hours straight to symbolize Winston's round-the-clock medical care.
Justice raised $10,000 for Winston.
The Bertrands use health insurance and Medicaid, but that doesn't cover all medical expenses or transportation and lodging costs.
Gretchen Fisher, Bertrand's Kappa Alpha Theta sorority sister from the University of Kansas, created a meal drop-off system. Another sorority sister, Polly Peters, spearheaded an "extreme home makeover," surprising the couple by cleaning their home and sprucing up the backyard with new furniture and plants while the couple went out on a rare date.
Blue Valley Northwest High School students, many of whom Bertrand taught at Cottonwood Point Elementary, have organized a nursery supply drive and will be selling "Winston's Warriors" T-shirts. A parent of one of the students, Dena Bartlett, is organizing a silent auction.
"It's not easy to accept charity, especially from teenagers," Chris Bertrand said. "It's quite humbling."
Bertrand is creating a Web site as a resource to help other parents of ill children, www.hugsforthesoul.com. And she and local artist Alisa Ross are developing a line of clothing for children with special needs. Distributed by McClatchy-Tribune Information Services.