From loss, a plan for families of ill children

Two heart valves, each no bigger than a dime, were removed from Devon-Nicole's 9-pound body. She died in July 1999 from complications of delivery five days after she was born in a New Hampshire hospital. Soon after, her tiny valves pumped life back into a 3-day-old baby boy and a newborn baby girl.

And now, Missert, 36, and his wife, Deanna, are on a mission to memorialize Devon-Nicole by establishing a home away from home for families whose children are patients at Children's.

But their dream for Devon Nicole's House is running into the harsh reality of Boston's real estate market.

Thomas Missert, who lives in New Hampshire with his wife and 3-year-old triplets, toured the cardiac unit at Children's three weeks ago, and he was struck by the lack of accommodations for out-of-town families wishing to be close to their children who are patients.

''We know there are a lot of obstacles,'' said Missert. ''But there is certainly a need there. This is not a new idea to Children's Hospital or other groups and organizations. There just hasn't been a focus to give this effort a real push.''

But according to real estate and neighborhood development experts, the Missert family is facing a huge undertaking, soaring prices for houses and apartments in Greater Boston.

But Boston's hot real estate market doesn't deter the Misserts. They say they plan to pour the same time, energy, and love into establishing Devon Nicole's House as if they were raising their little girl.

''They [Children's] have about 50 beds for the kids in the cardiac unit alone, and about nine cots are all they have to support typically 20 to 30 families,'' Thomas Missert said.

There are several programs that already provide accommodations for families, such as Ronald McDonald House, which is typically used by families of oncology patients, and hospitality programs in which local families donate space in their homes for out-of-town families, said Susan Craig, a hospital spokeswoman.

''We do allow one parent to stay overnight in some units,'' she said. ''They can stay bedside, but not for a long period of time.''

Hospital officials will also refer families to other programs, such as Saint Margaret's Convent, or make referrals to more inexpensive hotels.

But the hospital does not provide a freestanding building with long-term accommodations. The proposed Devon Nicole's House would have room for about 15 families, a communal kitchen, a library with online services, and a small staff.

The Misserts have already appointed eight members to the board of directors for Devon-Nicole's House. They have secured donations from community members and friends, and they have begun fund-raising with a goal of $5 million to purchase and maintain a building in Brookline or Chestnut Hill.

''We have no reasons why, but we've been led to do this,'' said Missert.

He spoke of his memory of holding his daughter in the last few days of her life.

''It was hard to watch during the course of the afternoon,'' he said. ''Devon's heartbeat dropped from normal to 65 beats per minute. Each time it would come back up, but then it would beat even slower.''

Soon after, their little girl was gone. But Thomas and Deanna Missert are intent on bringing Devon Nicole's House to life to make sure she is never forgotten.

On Feb. 10, a Valentine's Dinner Cruise on the motor vessel Odyssey to benefit Devon Nicole's House will depart from Rowes Wharf in Boston. For tickets and information, call 603-437-3670 or check the Web site www.devonshouse.org.

This story ran on page 5 of the Boston Globe on 2/1/2001.
© Copyright 2001 Globe Newspaper Company.