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Jeffrey D. Allred, Deseret Morning News
Lisa Blackett talks with granddaughter Savanah Lili Rasch, who was born prematurely at 25 weeks, at Tuesday's program launch.

The March of Dimes on Tuesday launched a new support program for families whose babies are in the newborn intensive care at University Hospital.

The March of Dimes staffer who will run the program on site has herself been there, survived that, her own twins born way too soon. Rachel Hixson was only 23 weeks along when she delivered Annie Mae and Abbie in 2000. Abbie did not survive, but while Annie Mae has had challenges and is legally blind as a result of extreme prematurity, "she's doing well and is very happy."

Hixson and her family spent many hours, some of them very stressful, at the hospital. She knows firsthand about being afraid and grateful and bored and stressed when a child is in intensive care for weeks.

For the March of Dimes' new NICU Family Support Program — one of 55 nationwide — she'll work about 28 hours a week with families, the hospital's existing Parent to Parent program and others to help the NICU families. That includes providing some bedside services, educational and supportive activities and more. One challenge is providing families with ways to connect with their babies, who are too fragile to be handled like a child who was born full term, Hixson says. Another is simply helping people pass time.

The new NICU program will also help families whose babies don't survive, said Amy L. Hansen, March of Dimes director.

Hansen said one in 10 newborns end up in intensive care because they are too small, premature or have birth defects. It's an overwhelming thing to those families. The program will provide a parent kit, information books and materials, practical guidance and more.

Hixson speaks Spanish, as well, so she'll be able to work closely with the growing number of Hispanic families that need NICU services, Hansen says.

"Like a roller coaster — hang on tight and hope that it goes well" is how Marci Blackett Rasch remembers the days when her baby, Savanah Lili, now 2, was hospitalized after being born too soon. At birth, she was 13 inches long and weighed 1 pound and 14 ounces. For 90 days, NICU was home for mother and baby. Now the two are just finishing a year as the "ambassador family" for the March of Dimes in Utah.

Tuesday, 46 babies were in the U. NICU, including tiny twins Cambrie and Layna, now 20 days old and "doing good." Their mom, Jessica Camarella, was hospitalized for a month of bed rest prior to their birth, but they still arrived nearly two months before her Jan. 6 due date. So she spends long hours in the intensive care unit, loving and watching over her babies.

The U. Parent to Parent program involves a lot of NICU-grad moms and dads as mentors for others going through it, says Dr. Jeff King, neonatologist. Add in the March of Dimes program, which meshes well with it, and you have an array of services for these families.

In a year, 600 newborns pass through the intensive care, he says. The facts that in just over a decade, the number of babies in NICU has about doubled, and that an increasing number of families don't speak English as a primary language, have "overwhelmed" volunteers at times, King says. And fewer people are volunteering than in the past.

The new program receives funding from MedImmune, Children's Medical Ventures/Respironics, Scholastic and Farmers Insurance. Local grants are from Simmons Family Foundation, George S. and Dolores Dore Eccles Foundation, Ronald McDonald House Charities, Watkins Foundation, Qwest Family Work Development Fund Board, Marriner S. Eccles Foundation, Henry S. Hemingway and MedImmune.

E-mail: lois@desnews.com