Collaborating for Neonates: Providing Family-Centered, Comprehensive Care at Children’s Minnesota

By Katy Mena-Berkley
Wednesday, October 30, 2019

For 95 years, Children’s Minnesota has provided specialized care for children from birth through young adulthood.

Tom George, MD, System Medical Director of Neonatology and Level IV Medical Director at Children’s Minnesota

The breadth of its programs has bolstered its expertise and experience for decades — recently earning it the American College of Surgeons designation as the only Level I Children’s Surgery Center in Minnesota. One of the health system’s pillar programs has long been neonatology, through which Children’s Minnesota cares for nearly 3,000 newborns each year — more than any other health system in the state.

“With the largest neonatology program in the Upper Midwest, Children’s has a breadth of expertise that allows us to provide the highest quality medical care,” says Mark Bergeron, MD, MPH, Director of Special Care Nurseries and Neonatal Virtual Care and Associate Director of the Level IV NICU at Children’s Minnesota. “We have a comprehensive care team of experts who are involved in neonatal care, from neonatologists, neonatal nurses and neonatal nurse practitioners to physical therapists, pharmacists and respiratory therapists, among other specialists.”

Led by Tom George, MD, System Medical Director of Neonatology and Level IV Medical Director at Children’s Minnesota, the team of 20 neonatologists has nearly 200 years of combined neonatal experience. They provide 24/7 on-site coverage in both the Minneapolis and St. Paul locations and work in a collaborative team-based model with daily bedside rounds that include the patient’s family and nurse, as well as other members of the care team, including pharmacists, dietitians and respiratory therapists. The neonatal program is backed by an array of pediatric medical and surgical specialists from Children’s Minnesota, who work with the neonatal teams to optimize care and outcomes. This care has led to the national recognition of Children’s Minnesota as one of the top neonatal programs by U.S. News & World Report and the top-ranked program in the state in 2019. The neonatology program has also embarked on a multiyear clinical partnership with the University of Minnesota Physicians, building upon the decades-long educational partnership in the training of pediatricians and neonatologists.

Brad Allen Feltis, MD, PhD, Pediatric Surgeon and Surgical Director of MWFCC

The neonatology program is also an integral part of the multidisciplinary team at the Midwest Fetal Care Center (MWFCC), which brings together a team of highly trained maternal-fetal medicine experts from Allina Health and neonatal and pediatric specialists from Children’s Minnesota. When needed, the team collaborates in advanced prenatal interventions, such as open fetal surgery, and are equipped with the expertise to care for the most complex cases.

“Kids do demonstrably better at centers with significant experience, robust infrastructure and an elite skill set,” says Brad Allen Feltis, MD, PhD, Pediatric Surgeon and Surgical Director of MWFCC. “We hold ourselves to the highest standards and expect outstanding outcomes because of the significant investments made in personnel, resources and infrastructure. These elements allow us to offer patients and families the best treatment plans for optimal outcomes.”

Collaborative care before birth

Expectant mom Rachel Carlstrom presented at a community hospital with a serious abnormality at her 20-week ultrasound — her baby was diagnosed with a congenital diaphragmatic hernia (CDH).

“That was when [husband] Adam and I were told to go home and decide whether or not we were going to continue with the pregnancy,” Carlstrom says. “It was really hard for us to hear. We said immediately that we were going to continue, no matter what. She was going to fight, and we were going to fight for her.”

Carlstrom was referred to MWFCC for further investigation into the severity of her baby’s condition. There, a multidisciplinary team planned for her infant’s unique needs, from diagnosis through postoperative recovery and long-term follow-up.

A prenatal MRI enabled the clinicians to calculate organ volumes to further refine risk stratification, which is a type of testing only a handful of facilities in the country are equipped to perform.

Carlstrom’s baby, Evangeline, had a moderately severe risk stratification, which required the care team and her parents to prepare for the spectrum of possibilities that could occur after birth, including a 20% chance of needing extracorporeal membrane oxygenation (ECMO) to oxygenate her blood.

“It is very stressful news for the parents, because there is a mortality associated with congenital diaphragmatic hernias … 10% to 15% of these babies don’t survive,” Dr. Feltis says. “When they are at the more severe end of the spectrum, the condition might not be compatible with life, which is why we spend a lot of time on risk stratification.”

To help parents like the Carlstroms through the experience, families are provided with a wealth of information about their baby’s diagnosis and postnatal treatment plan as well as introduced to their entire care team.

“CDH is a really complex diagnosis that requires coordination across the whole spectrum of a children’s hospital — to both anticipate the child’s and family’s needs, and then use that information to provide excellent care at the bedside,” Dr. Bergeron says. “The capability to do that really highlights what sets Children’s Minnesota apart.”

“As neonatologists, we’re basically a baby’s pediatrician right up until his or her first clinic visit, so we coordinate every aspect of care — deciding which specialist needs to be involved and selecting what medication or procedure is necessary to ensure health and promote recovery. That’s the nice thing about being in a comprehensive children’s hospital. Specialists are just steps or a phone call away and can come right to the bedside. We can make decisions together with families in real time.”
— Mark Bergeron, MD, MPH, Director of Special Care Nurseries and Neonatal Virtual Care and Associate Director of the Level IV NICU at Children’s Minnesota

Mark Bergeron, MD, MPH, Director of Special Care Nurseries and Neonatal Virtual Care and Associate Director of the Level IV NICU at Children’s Minnesota

Top capabilities and services

Evangeline was born on March 5, 2019. A tailored team of specialists from Allina Health and Children’s Minnesota, including a perinatologist, neonatologist, neonatal nurse practitioners, nurses and respiratory therapists, was present at the delivery. They immediately launched into action, placing a breathing tube, inserting catheters into her umbilical vessels and stabilizing her on a ventilator before transporting her to the NICU.

While partnering with families throughout the journey, neonatologists and neonatal nurse practitioners take the lead in caring for NICU babies.

“We are in-house 24 hours a day, seven days a week,” Dr. Bergeron says. “It is to the benefit of the patients that we are there at the bedside when we need to be, making critical decisions with the families and our other colleagues.”

The medical team’s first goal for Evangeline was to reduce the blood pressure in her lung arteries, a condition known as pulmonary hypertension, which was a prerequisite for surgery to repair her CDH. All newborns with CDH have some degree of pulmonary hypertension, and the severity of the condition affects the extent to which their organ systems are able to function.

“In some cases, the blood pressure inside the lungs is so high that the heart can’t pump blood through the lungs,” Dr. Feltis says. “Those are the babies who need ECMO.”

The team was monitoring Evangeline moment by moment, prepared to place her on ECMO support if necessary. Children’s Minnesota has one of the largest ECMO programs in the state, and 81% of infants born with CDH who receive ECMO support there survive. Fortunately, Evangeline did not need ECMO, but the neonatal and ECMO teams communicated often and remained on high alert for the first several days, using intensive medication management and ventilator support to help reduce the blood pressure in Evangeline’s lungs to a level that would allow her to tolerate surgery.

For Evangeline, who was missing more than two-thirds of her diaphragm, Dr. Feltis separated the thoracic and abdominal cavities and placed a mesh patch in the space that otherwise would have been occupied by much of the diaphragm. The patch prevents the contents of the abdominal cavity from entering the thoracic cavity. The complex surgery was a success, due in large part to the specialized skills of the surgical team and the volume of procedures performed at Children’s Minnesota each year — more than 20,000 in 2018, including 11 CDH operations.

“All through my pregnancy and even up until now, my family and I have felt so taken care of. We are just so grateful.”
— Rachel Carlstrom

Prioritizing communication and continuing care

Another driving factor in Children’s Minnesota’s outstanding reputation and outcomes for neonatal care is its commitment to communication with parents. Neonatologists constantly stayed in close contact with the Carlstroms, ensuring that they, along with their daughter, were at the center of Evangeline’s care.

“I never once doubted the decisions that the doctors were making, and I think it had something to do with the institution as a whole,” Carlstrom says. “Every time there was a big decision to be made, everybody always had the time — no matter how busy they were — to sit down with Adam and me. Through this support, they made sure we were feeling confident and comfortable.”

With a plethora of possible complications due to her condition, Evangeline’s extended stay in the NICU was an anxious time for the family, but the Children’s Minnesota care team was there every step of the way. One day, while Evangeline was in the NICU, the Carlstroms received a call from a neonatal nurse practitioner who informed them that the medical team needed to reintubate their daughter. The family hurried to the hospital, fearful of what that could mean for her future.

“The nurse practitioner and physician spent 30 minutes or more sitting in Evangeline’s room and explaining everything to us — why she needed to be reintubated, what the tests showed and why that was concerning,” Carlstrom says. “I’d never seen parents treated with that sort of bedside manner anywhere else.”

After six months in the Children’s Minnesota NICU and Infant Care Center, Evangeline eventually came home for the first time. Even after being discharged, Children’s Minnesota will continue its partnership with the family. She will be seen by pulmonologists and cardiologists, and as part of the NICU follow-up program, a neonatologist will monitor Evangeline’s developmental progress and make recommendations to her family and primary care provider through age 5.

“Our commitment to Evangeline’s health does not stop the day we turn her over to her pediatrician,” Dr. Bergeron says. “We are there in step with the family on this journey, and we remain a community resource to providers and families throughout early childhood.”

Commitment to community and partners in care

As the leading neonatology program in the Upper Midwest and largest pediatric health system in the state, Children’s Minnesota’s care extends beyond the walls of its NICUs, hospitals and clinics. Children’s Minnesota has been expanding its services to support the community through critical care transport and neonatal virtual care, both of which aim to support regional hospitals in keeping babies in their communities. Children’s Minnesota has also led the way in advocating for important topics like newborn screenings and bringing awareness to neonatal abstinence syndrome.

To learn more about Children’s Minnesota neonatal program, visit For 24/7 referral, consult, admission and transport assistance, call Children’s Physician Access at 866-755-2121.