Mother of Preemie Twins Speaks Out About NICU Family Experience

The healthcare industry has seen several rapid shifts in recent years due to the increasing “consumerization” of healthcare as a whole. At the center of this change in landscape is the topic of patient experience, and the practices that produce a great experience—or a terrible one.

In the neonatal and pediatric fields, patient experience is often assessed following treatment in the NICU or PICU. How can physicians and leaders ensure their patients receive the very best care possible while also enjoying a patient-centric encounter? What can healthcare professionals do to provide the best possible pediatric and neonatal patient experience?

A Mother’s Perspective

Lauren Fontana has been sharing about her family’s experience since her twin boys graduated from the NICU at St. Luke’s University Health inBethlehem, Pennsylvania. Luca and Liam were delivered by C-section at 25 weeks and 5 days gestation on what Lauren described as the single worst day of her life. Since then, Lauren has been working with the neonatal team at St. Luke’s to support families and improve the patient experience in the NICU.

St. Luke’s University Health Network (SLUHN) neonatology director Dr. Kimberly Costello, a member of Onsite Neonatal’s executive team, invited Lauren to serve as a Parent Advisor for the SLUHN NICU to collaborate with members of their hospitals’ neonatal teams. Lauren did not hesitate to accept. “I get to provide extra emotional support to parents with children in the NICU and to share a parent’s perspective with the neonatologists,” said Fontana.

“I get to provide extra emotional support to parents with children in the NICU and to share a parent’s perspective with the neonatologists.”

The feedback she provides helps to prioritize the parents’ experience by making changes only a family member would notice, like removing certain well-intentioned promotional material that could have a negative connotation for a preemie parent. She has also helped to make larger policy changes based on her personal experience, including making sure a mother gets to see her baby before they are taken to the NICU. The willingness of Dr. Costello and the St. Luke’s team to consult parents like Lauren is making a noticeable impact on the experience of other NICU families.

SLUHN/Onsite Neonatology Director Dr Kim Costello with Luca and Liam Fontana at a March Of Dimes event

Compassionate and Attentive Providers

A key aspect of Lauren’s positive experience in the NICU was the openness and compassion of the neonatal staff. During the 5 day hospital stay prior to her C-section, Onsite neonatologists took extra time to meet with Lauren and her husband, Chris, to explain their preemies’ complications in simple terms, as well as outlining the treatments they were prepared to offer. “We always felt super well informed and prepared, which put us at ease.” remembered Lauren.

“It’s not over for the doctors after the kids leave the NICU.”

Lauren also mentioned that she was impressed and relieved by the dedication of the neonatal team, noting that they didn’t treat their time in the NICU like a normal 9-5. “It’s not over for the doctors after the kids leave the NICU.” Onsite neonatologists stayed in touch with Lauren after Luca and Liam graduated from the NICU, checking in on their progress and making themselves available to answer questions.

Lauren & Chris Fontana leaving the SLUHN NICU with Luca & Liam

Commitment to Quality and Family-Centered Care

At one point during their 99 day stay in the NICU, Luca was transferred to another hospital for a potential surgery. Lauren remembers the stark difference between the care the boys were receiving at St. Luke’s and the other facility. “It was so depressing to see the difference in care and the lack of commitment to family-centered care that the other facility had,” said Lauren.

Lauren said that overall she felt much more respected by the team at St. Luke’s, noting their humility and encouragement for the parent to participate in the care of their child. Fontana mentioned one instance in particular when the boys were scheduled to come off oxygen, but her request to keep them on was supported, proving to be valuable for her twins. “I felt so much better and so much more respected at St. Luke’s.”

“I felt so much better and so much more respected at St. Luke’s.”

Lauren and Chris’s story illustrates the powerful principle that a positive family experience can drastically change a family’s perception of the care they receive. For Lauren, the SLUHN team and Onsite physicians married high-quality care and emotional intelligence to improve outcomes for her boys and leave a lasting positive impact on her family. Hospitals and networks can learn from her story and partner with experienced pediatric and neonatal groups to improve the experience of their PICU and NICU families. Onsite Neonatal Partners is committed to practicing evidence-based medicine in order to keep mothers and babies together, improving outcomes for infants and increasing parent satisfaction.