Lori, NICU Parent Support Coordinator
Being completely consumed with worry over a newborn baby is a familiar feeling for Lori. Her daughter,
Reagan, spent three and half months in the Newborn Intensive Care Unit (NICU) at Utah Valley Regional Medical after being born eight weeks early in July of 2002.
In the weeks that followed her daughter’s birth, Lori learned a lot about what happens on the unit and even more about the people who work there. That knowledge combined with her personal experience makes Lori an ideal NICU parent support coordinator.
“Being in the NICU is all consuming. People think they can understand, but I’m someone who has actually been there and that helps me relate,” says Lori. “I knew NICUs existed, but I couldn’t even imagine what it would be like. Then suddenly you’re thrust into this situation and you have to fight for your child to survive. It’s very stressful.”
Doctors in the NICU diagnosed Lori’s daughter with fetal hydrops syndrome, a condition where the body develops extra chambers of fluid that are automatically reproduced. Extra fluid developed near Reagan’s lungs and heart which meant she spent more than two months on a ventilator. Lori says the NICU physicians and staff played an integral role in helping her daughter survive a condition that normally takes a baby’s life before birth.
“We had a really rocky stay in the NICU. The staff helped me so much; they became my friends and a big part of my support group. I became very close to the NICU staff and I was really excited about coming back and being a part of that,” recalls Lori.
Lori first came back to the unit as a volunteer and then in January of 2005 she took over the parent support coordinator position. One of her main responsibilities is to coordinate the unit’s group of volunteers who are known as the Common Bonds Parent Support Group. Members of Common Bonds have all had babies in the NICU and they have developed a wide variety of ways to help parents through the experience.
For example, there’s a parent pizza hour once a week. In past years, that meant there was pizza available in the unit’s parent lounge. Lori, however, knew more could be done and since taking over her position, has transformed that weekly offering into a true opportunity for parents to meet and offer support to each other.
“Now families come and we do introductions and we include an educational component. Then parents can just share. There’s a lot of informal time where parents can talk and get to know each other,” says Lori. “Our main goal is to help form friendships that will support parents through their NICU stay.”
Although Lori is happy to share her experience as an NICU parent, she only offers details if others ask. She wants her interactions with new parents to be about what they’re going through and what will help them, but many times what they need is to hear that there is life after the NICU.
“Lots of times they ask about my child and what happened. If they ask, I give them as many details as they want. Once they know I’ve been there, lots of times they cry and give me hugs,” Lori says.
Sharing the story of her daughter’s fight for life isn’t hard for Lori — in fact it is something she’s glad she gets to do on a regular basis. “I don’t want to forget my experience. I don’t want to forget how blessed I am. What happened to my daughter happened for a reason and I owe something back. I owe something back and my life is blessed every day that I help here.”
Heather, Bereavement Coordinator
Heather Walker’s first child was a healthy baby boy and life seemed perfect for the young family. Then at just 10 months old, their son’s health began to decline unexpectedly and within five short months, the family had to bury their little boy. Heather refused to let grief overtake her. Her unyielding determination led her to Utah Valley Regional Medical Center where other families were in similar situations.
After volunteering for months, a permanent bereavement position became available and for the past 11 years, she has been mourning with and supporting those stricken with grief as she works directly with families who lose a precious baby. Depending on what a family requests, Heather helps make hand molds, hand and feet prints and collect hair, clothing or photos. “We provide whatever the family needs at that point,” Heather says.
Heather has been inspired by the way families cope with their loss by donating baby clothes and other supplies to the hospital. “It would be impossible to do what we do without that,” she says. It’s rare for a hospital to provide a bereavement position and Heather is impressed by the concern she sees for individuals and families. “Intermountain Healthcare is amazing to have this position in hospital protocol,” Heather says.