The young woman can feel her heart pounding somewhere near her throat. She studies the map the security guard gave her at the Hospital’s entrance, but her confused and cloudy thinking makes the simple impossible. She travels an unending corridor attempting to locate her child. The halls seem to branch every which way. Fear presses her chest, making each breath a chore. The child she has carried for months – but never held in her arms – has not seen her face. Will her baby even know who she is? The new mother finally makes her way into an unfamiliar neonatal intensive care unit (NICU). She searches for a friendly face. Will anyone see her? Will someone reach out to her?
Tiffanie Boyes came looking for her tiny baby as soon as she was released from Kaweah Delta Medical Center in Visalia. “I lost it,” she said of her first moments in the NICU at Children's Hospital Central California in May 2010. “Her eyes were fused shut and her skin was see-through,” Boyes said of her daughter, Lyla, born at 23 weeks and weighing just 590 grams. “You’ve never seen anything like it.”
“I don’t go up there,” said Katie Baker nearly two years after her daughters, Clara and Olivia, left our NICU for home. “It’s hard for me to go up there still, and I’m a nurse practitioner.” Baker works in oncology at Children’s Hospital, but she found herself in a very different role when she delivered twins weighing less than 3 ½ pounds combined. “You never think it’s gonna happen to you,” she said.
Tracy Gong of Fresno vividly remembers her experience in May 2003. Her daughter, Miranda, weighed 2 pounds 2 ounces at birth, and spent two months in the Hospital’s NICU, an 88-bed Regional Level IIIc NICU with 21 private and semi-private rooms. Today Gong serves as lead parent on the Partners in Care Council (PIC), and is one of several parent partners volunteering her time to guide parents like Boyes and Baker through the overwhelming, scary process of having a newborn whisked away with critical healthcare needs.
“You feel like the baby is theirs because you’ve never had the baby home,” said Gong. The desire to help parents feel more like parents compelled her to join Children’s PIC council. Members of this interdisciplinary committee include professionals and volunteer parents with personal experience in the Hospital’s NICU. Formed in 2007 by NICU nurses who recognized the need, PIC works hard to create an environment in which parents can shift from feeling like powerless outsiders to actively partnering in the care of their baby.
“When we keep them as outsiders we may even make new moms and new dads feel like they’re incapable,” said Sue Labbe, registered nurse certified - neonatal intensive care at Children’s and chair of PIC. “I don’t think anybody realizes that’s what’s happening. When you’re so focused on what you need to get done, you don’t realize the effect you have on the parents.”
Rachel Harrison, registered nurse at Children’s and previous PIC chair, agrees. “Nurses don’t always see the other side,” she said. Harrison, Labbe and other members of the NICU staff developed Partners in Care to broaden their perspective and to demonstrate their passion to provide family-centered care.
Family-centered care has gained more attention since former Surgeon General C. Everett Koop, medical doctor and fellow of the American Academy of Pediatrics, began his crusade to advance a new and better way to deliver healthcare. During a conference held in June 1987 entitled “Campaign ’87: Commitment to Family-Centered Coordinated Care for Children with Special Health Care Needs,” Dr. Koop announced a plan of action that introduced a challenging shift in thinking and practice. He proposed several steps that Children’s Hospital Central California adopted, including:
- Share unbiased and complete information about children with their parents
- Facilitate parent/professional collaboration in the healthcare of children
- Provide emotional and financial support for families
- Encourage parent-to-parent support
- Promote an interdisciplinary approach to care
- Be sensitive to cultural differences
“Family-centered care is so important in the NICU because family dynamics are just forming,” said Labbe. “It sets the stage for relationships. Supporting the family from the very beginning is a huge part of what we should be doing.” Labbe believes listening to parents share their knowledge of what the child needs and respecting what they know can not only benefit the child’s health, but also the relational health of the family.
As the specialized agent to promote family-centered care in the Hospital’s NICU, the PIC council strives to identify and respect the strengths and individuality of every NICU parent, and to initiate communication to meet their needs.
Boyes’ micropreemie daughter, Lyla, spent 131 days in our NICU. Just 23 weeks into her pregnancy, Boyes developed a life-threatening illness known as HELLP syndrome, which caused high blood pressure, temporary blindness and seizures. Her husband drove from their Tulare home to the hospital in Visalia unaware of how dangerously ill his wife was. “My mom works at Kaweah Delta and they told her, ‘If we don’t take the baby, your daughter’s going to die,’” said Boyes. “They said there was no choice in order to save my life, and hopefully the baby makes it.” Lyla was delivered by emergency cesarean section and transported to Children's Hospital Central California. “This is not the way babies are supposed to be born, but we’re so thankful the technology is there if you need it,” said Boyes.
For the first two months of Lyla’s life, Boyes made the trip from Tulare every day. “It was especially hard because I couldn’t drive for two months,” she said. Later she came every other day until Lyla was discharged. “Being one hour away is no big deal,” she said. “It’s worth it for the care that we received. We feel like this became a second home.” Within the first week of her daily pilgrimage, Boyes learned about the parent program through a flier left on her baby’s incubator. It advertised the council’s bimonthly “Parent Chat Night,” which gives NICU parents an opportunity to talk about their experiences caring for a medically fragile infant. “I figured, I’m here, I may as well go,” said Boyes.
Baker also attended “Parent Chat Night.” She heard of it through a schedule of events calendar posted in the NICU. “For a while you don’t even want to speak about it ‘cause it makes it real,” she said. Eventually Baker joined other parents in sharing frustrations and fears. “You don’t have friends that understand it. It’s unique in that there’s only a handful of people who share this with you,” she said.
The PIC council established “Parent Chat Night” not only to encourage parent-to-parent support, but also to provide an avenue for sharing information. As parents gain knowledge, they feel more at ease caring for their critically ill babies. “We want the parents to be active in care – taking temperatures, changing diapers, turning the baby,” said Harrison. “It gives them an opportunity to interact, to bond with their babies.”
Gong knows firsthand the significance of the smallest degree of interaction. “The thrill of the day was when I came to see her and I’d say, ‘Is she wet? OK, let me do that.’ And my husband would take her temperature,” she said.
“We’ve received such wonderful insights from the parents who have graced us enough to share their knowledge. That’s a huge resource,” Labbe said of parent alums like Gong, who volunteer to mentor current NICU parents. Labbe also acknowledges the role she and her fellow NICU nurses play in promoting parental involvement. “Education is a huge part of making care family-centered. You have to give them the knowledge,” she said. “I’m a huge proponent of educating families as a way to make sure parents are involved.”
Boyes could not hold Lyla for six weeks. “She had to weigh 2,000 grams and be able to use a CPAP,” said Boyes, referring to a method of respiratory ventilation known as "continuous positive airway pressure." By the time Lyla was extubated and placed in her mommy’s arms, Boyes was more than ready to provide hands-on care. “My husband held her for the first time on Father’s Day,” said Boyes. He shared his wife’s desire to nurture their daughter. “If we’re here, let us do it. If we can do it, let us do it. We’re her parents. We want to do what we can,” she said.
Baker was grateful for the nurses’ willingness to involve her in the care of her twins. “You want to be the parent. You want to dress them,” she said. Baker rolled a cart of children’s books into the NICU every day and read to her babies: “I’d say, ‘what do you want to hear today?’”
Some parents are more fearful. “They need someone to tell them they can do it and not shoo them away,” said Labbe. “If they have no confidence, you’re setting them up to fail when they take that baby home. Our job is showing them what they can do.”
Labbe also stressed the value of allowing parents to step in and work in tandem with the nursing staff. “There’s value to having one person at that baby’s side constantly,” she said. “A parent learns the signals, knows when the baby needs changing or feeding. By being with their baby consistently, parents would know, for example, that in order to get their baby to eat well, it’s better to let him wake on his own.”
Labbe recognizes that for some nurses, taking direction from parents about their patients represents a radical shift in thinking and practice. “Respect for the parents’ knowledge of their child is huge,” said Labbe “To respect their ability to make decisions is huge. Our role as the committee is to support parents as a necessary expert. We have different caregivers, and it’s an asset to have an expert on what the child needs.”
Baker was consumed with the condition of her critically ill twins. “It kinda takes over your life. You’re different,” she said. Coming to Children's Hospital as a parent rather than as a nurse practitioner changed her. “It’s made me more sensitive to my patients.”
“Successful family-centered care practice relies heavily on the attitudes of staff,” said Labbe. “If family-centered care is perceived to have great value, it will be practiced. If it’s perceived as causing difficulties and interfering with patient care, then it will not be practiced,” she said.
Labbe believes that as more staff sees the benefit of partnering with parents, the more they embrace the practice. “A key to accepting and promoting family-centered care in the NICU is recognizing the medical benefit. Some may think, ‘Oh, it’s just fluff,’ but there’s a true medical benefit. It can improve our medical outcomes,” she said.
The PIC council recognizes exemplary practice by giving a family-centered care champion award every month to a staff member who respects the parent’s role as an expert and partner in providing care. “These individuals serve as mentors for others at various levels of skill acquisition,” said Labbe. Staff and parents nominate champions, and the council chooses a winner. The award draws attention to real life examples of what family-centered care looks like in practice. “When we say, ‘this person did this, this and this,’ it’s a good step in an evolutionary process as others learn by that person’s example,” said Labbe.
Harrison has said that in order to practice family-centered care successfully, medical professionals must respect the parents’ knowledge of their child and their ability to make decisions regarding their child’s healthcare. She noted that the nursing governance structure at Children’s Hospital calls for recognizing parents as partners rather than visitors. “Partners in Care gets parents involved,” said Harrison. “It’s about viewing parents as an integral part in getting the baby ready to go home.”
Baker appreciated the steps the NICU staff took to educate her. “It’s hard because you are going to take this baby home, and you’ve been so reliant,” she said.
“The nurses were gracious,” said Boyes, grateful to receive their hands-on instruction. “I want to be the best mommy I can be because she deserves that.”
Labbe initiated a 90-minute discharge class in January 2009. Currently 13 NICU nurses take turns teaching classes twice a week in English and once a week in Spanish. “I see the benefits of the discharge class from my work in the high-risk infant follow-up clinic,” she said.
The discharge class is far from the last contact NICU parents have with Partners in Care. In fact, several lasting friendships have formed between parents who met through shared NICU experiences. Avenues for connecting include:
Parent Partner Hospital Visits
- Parent alums on the PIC council visit the NICU regularly.
- Past NICU parents offer guidance and support to current parents.
Parent Chat Night
- Past and current NICU parents meet the first and third Wednesday of every month at 6:30 p.m. at the Hospital to share stories and receive encouragement.
- NICU parents connect online by invitation only.
- The PIC council hosts a get together from 2 p.m. to 4 p.m. the fourth Monday of every month at the Hospital featuring various educational subjects and other topics of interest to NICU parents.
NICU Reunion Picnic
- NICU administration sponsors a celebration every October.
Baker enjoys the opportunities to stay in touch. “You have all the support when you’re in the building. It’s harder at home. You have time to process what’s happening,” she said. Gong sometimes contacts past NICU parents to see if they would be interested in connecting with parents currently going through a similar situation. She asked Baker about reaching out to a woman who also gave birth to twins at 26 weeks. Baker kindled a mutually beneficial relationship. “She invited me to her twins’ first birthday party,” she said of the appreciative mother. “That’s a big deal – the first birthday – when you have a preemie.”
Boyes surprised NICU nurses and parents alike when she appeared with her family at the annual NICU reunion picnic held just one month after Lyla was discharged. The relationships she formed over the nearly 4 ½ months that her daughter spent at Children's Hospital made the picnic a party not to be missed.
Parents with a medically fragile newborn sit at their baby’s bedside each day on pins and needles. “You don’t ever want to step away because something’s gonna happen while you’re gone,” said Baker. Partners in Care exists to round off the edges of a difficult situation.
For more information about the Partners in Care Council, please email the council chair at firstname.lastname@example.org or call NICU Administration at (559) 353-5112. To learm more about Parent to Parent, please contact a parent partner at ParentToParentNICU@gmail.com.