Paired Perspectives

UH Rainbow neonatologists part of panel offering both personal and professional advice for helping NICU parents

Department of Pediatrics - January 2017

 Avroy Fanaroff, MD

 Jonathan Fanaroff, MD

 Kristin Voos, MD

Showing genuine empathy is paramount in the humane practice of medicine – never more so when dealing with a critically ill newborn and his or her parents. Fortunately, aiding in the process is a group with unquestionable authority – neonatology physicians, nurses and scientists who themselves have had a child or grandchild in the neonatal intensive care unit (NICU). This group of more than 20 experts with both professional and personal experience has published a reflection on the NICU experience, including recommendations for clinicians and researchers both in and out of the NICU. The group published its report recently in the journal Pediatrics.

“Taking care of these complex patients is a team effort, beyond the NICU,” says Avroy Fanaroff, MD, FRCPE, FRCPCH, former Chief of Neonatology and Chairman of Pediatrics at University Hospitals Rainbow Babies & Children’s Hospital and Emeritus Professor, Pediatrics and Reproductive Biology, Case Western Reserve University School of Medicine; Emeritus Eliza Henry Barnes Chair in Neonatology, UH Rainbow Babies & Children's Hospital.

Dr. Fanaroff is a co-author of the recent Pediatrics article, along with his son Jonathan Fanaroff, MD, Co-Medical Director, Quentin & Elisabeth Alexander Neonatal Intensive Care Unit and Associate Professor, Pediatrics, Case Western Reserve University School of Medicine, and daughter-in-law Kristy Fanaroff, MSN, NNP. In 1969, Dr. Avroy Fanaroff had just started his neonatology fellowship at UH Rainbow when his son, Jonathan, was born and admitted to the NICU for a three-week stay. Fast forward to 2012: Dr. Jonathan Fanaroff, now Co-Medical Director of the UH Rainbow NICU, and his wife, Kristy, a neonatology nurse practitioner there, became the parents of Mason, born at 32 weeks, providing three generations experience in the NICU.

Dr. Avroy Fanaroff says he’s glad to share his professional and personal experiences with his colleagues, especially those outside the NICU.

“Other subspecialists and primary care providers, need to be cognizant of these recommendations,” he says.

Among the group’s recommendations: Be aware that parents experience both negative and positive impacts after an NICU experience, and strive for balanced communications. Try, the group says, to temper talking about risk with talking about resilience, love and the chance for healing.

“Words are like a sword, and you need to be very careful with what you say,” Dr. Avroy Fanaroff says. “It’s very easy to hurt the family.”

At UH Rainbow Babies & Children's, efforts are already under way to enhance services for NICU families. For one, the hospital has started a dedicated NICU Patient and Family Advisory Council (PFAC).

“Rainbow has had a rich history of family-centered care and involving parents in the NICU,” says Kristin Voos, MD, Director, Neonatal Family Centered Care, Quentin & Elisabeth Alexander Neonatal Intensive Care Unit and Associate Professor, Pediatrics, Case Western Reserve University School of Medicine. “We have a PFAC for the hospital as a whole, but the NICU is a very specific place. For our PFAC, we have three- to five-year veterans come back and make sure that we’re supporting families appropriately. There’s a lot of parent-to-parent support.”

The UH Rainbow NICU also offers its fellows a course on how to deliver hard news to parents – taught by the very NICU parents who’ve been on the receiving end of such news.

“A wonderful national trend is involving parents in the education of staff,” Dr. Voos says. “For our class, the trainees had to practice having to give this news, and the parents worked with them. When they go into the situation for the first time, the physicians will have had practice having these hard conversations.”

For Dr. Fanaroff, much of what constitutes best practice for NICU parents comes down to true conversation.

“When you’re talking to families, they may hear the first few words, but then they’re in shock,” he says. “You’re talking, but they’re not absorbing. You really need to come back again and again and go over it. Some of the key drivers of the conversations are to have pregnant pauses. You may ask questions and get information, but the key part that you’ll get from the family is when they initiate the conversation.”

For more information on the innovations in the UH Rainbow NICU, email Peds.Innovations@UHhospitals.org.