Friends at Birth
The March of Dimes NICU Family Support program gives worried parents what they need most: someone who understands
When Denise rock of Shawnee, Kan., was pregnant with her first child, she never expected that she would go home from the hospital and her baby wouldn’t. But Phillip, born in 2001, came along 15 weeks earlier than expected, and weighed less than two pounds. His life lasted only two days. It’s an experience Rock never wanted to relive, but less than a year later — when Rock experienced preterm labor again and daughter Leighton was born prematurely — she and husband Charlie once again found themselves worrying in the neonatal intensive care unit (NICU).
“I was afraid to touch her,” Rock, 36, recalls. “I was waiting for the other shoe to drop, waiting for them to tell me that she wasn’t going home with me.”
But two things were different about the couple’s second visit to the NICU. For one, during their baby’s 35-day stay in the hospital, the Rocks bonded with several other parents of premature infants, who could give support because they were all going through the same thing. And, most important, Leighton lived.
Bonding over a shared experience is the notion behind the March of Dimes NICU Family Support program, an initiative unveiled in 2004. “[It’s] to support those who are going to find themselves experiencing a stay in the NICU by providing them with information and comfort,” says Scott D. Berns, MD, MPH, vice president of chapter programs at March of Dimes headquarters in White Plains, N.Y.
Berns oversees NICU Family Support, which has two main strategies: educating NICU staff at participating hospitals so they can provide more family-centered care from the beginning of a child’s hospitalization; and involving parents of former NICU patients, to offer an invaluable “voice of experience” to parents of babies in the NICU.
Currently, hospitals in 40 states have NICU Family Support programs, and the March of Dimes predicts that by the end of 2007, there will be programs in all 50 states, as well as in Washington, D.C., and Puerto Rico. In addition to providing in-person support, March of Dimes programs for NICU families also include an online community at ShareYourStory.org.
A key benefit of a support system like the ShareYourStory Web site is that members who have already experienced preterm labor can share information that may help those who haven’t yet experienced the NICU have a better chance of carrying their babies to a full, 37-week term. The site has more than 17,000 registered members, including past NICU parents like Denise Rock.
When Rock found out that the NICU Family Support program was coming to St. Luke’s Hospital in Kansas City, Mo., near her home, she signed up as a volunteer. Even though she’s plenty busy as mom to two girls under 5 — daughter Emerson was born, also premature, in 2005 — and working 10-hour days as a program analyst for the Department of Housing and Urban Development, Rock feels the program is important enough to squeeze it into her schedule.
“Losing a child is the worst thing that has happened in my life,” she says. “I’m not the first one, but there are not very many [parents who’ve lost a child] who get to talk about their child all the time. I say Phillip’s name every day. He gets to live on even though he’s not here.”
Rock appreciates the fact that she can offer everyday advice to NICU parents, such as the best car seat for premature babies, and feeding tips. “After Phillip died, I vowed not to let his birth and death be for nothing,” she explains. “So even if I help just one person, his life had a purpose.” Through the March of Dimes NICU Family Support program, Rock is keeping her promise.
(Continental is the official airline of the March of Dimes National Ambassador Program and WalkAmerica.)
— Leah Ingram
