'Design Star' focuses on baby's health

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."