For families with premature or once critically ill babies, the NICU Follow-Up Clinic provides resources and peace of mind
By Nicole Endres
Rebecca and James Michael were expecting their second child in early November. But baby Emma could only wait until July 11, when she was born at one day over 23 weeks’ gestation, weighing a mere 1 pound 6 ounces.
While The Birthplace care team stayed with Becca at University of Minnesota Medical Center, Fairview, neonatologists immediately brought Emma to the adjacent University of Minnesota Amplatz Children’s Hospital’s neonatal intensive care unit (NICU), and James followed. He got a closer look at his tiny new daughter. He couldn’t shake off a sinking feeling in his stomach.
“All he would really say about her was that she was really little,” Becca recalls. “He didn’t want me to know anything about what she looked like because he didn’t think it would go well.”
Becca saw Emma up close for the first time a few hours later. “You can’t really fathom how small she would be,” she says. “We knew she was going to be there for a really long time.”
And she was — 133 days. In the NICU Emma needed a ventilator to breathe for six weeks. She also was treated for a blood infection, irregular blood sugar levels, and retinopathy of prematurity, among other issues. By the time the Michaels took Emma home shortly before Thanksgiving, she was still on oxygen and needed two shots daily to get rid of a blood clot that had formed right above her heart, in addition to five other medications they mixed into her milk.
Overwhelming? Definitely. But thanks to the care and training they’ve received through the NICU Follow-Up Clinic at Amplatz Children’s Hospital, the Michaels aren’t feeling lost and alone.
“It’s nice that when you leave the NICU, you don’t just get thrown out into the world,” Becca says. “You don’t feel like you just got let go.”
Winding and unwinding
In addition to providing a trusted resource for parents as their babies come home, the NICU Follow-Up Clinic staff helps to ensure these babies’ long-term well-being. Created in the late 1970s as preemies’ survival rates improved, the University’s follow-up program was one of the first in the nation to take a multidisciplinary approach to supporting the growth and development of NICU graduates through childhood.
The clinic’s staff — made up of neonatal intensive care physicians (the same doctors who staff the NICU), nurse practitioners, a child psychologist, and an occupational therapist — tracks milestones such as motor development, cognitive skills, and language development at critical times throughout the child’s young life and connects families with additional services as soon as a need is identified.
NICU graduates’ long-term health and developmental needs can vary greatly, depending on how early they arrived and what complications they had in the hospital.
“While the general public thinks of low-birth-weight infants as small versions of term babies, a prematurely born infant is at risk for complications in all organ systems because of immaturity,” says the NICU Follow-Up Clinic’s Indu Agarwal, M.D.
The most common problems preemies face after being discharged from the hospital, she says, include chronic lung disease, neurodevelopmental deficits or delays, slowed growth, apnea, vision loss, hearing loss, acid reflux, and complications of prior treatments in the NICU. (Some term babies who suffered traumatic deliveries, birth injuries, and infections, for example, also may need ongoing specialized care.)
According to the Centers for Disease Control and Prevention, 1.5 percent of the more than 4 million babies born in the United States every year are considered very low birth weight — less than 1,500 grams or 3 pounds 4 ounces. More than 80 percent of these 62,000 babies survive long enough to be discharged from the NICU, Agarwal says, and among the survivors, 20 to 40 percent need short-term or long-term specialty care.
“It’s a huge number of medically complex babies who need ongoing follow-up after they go home,” she says.
But the careful tracking and early intervention therapies offered through Amplatz Children’s Hospital’s NICU Follow-Up Clinic are meant to ensure that each child has the best chance for optimal development — and a bright future.
“In the clinic we are doing a lot of unwinding,” says its director, Michael Georgieff, M.D. “In the NICU we tend to wind parents up about all of the bad things that might happen. The NICU Follow-Up Clinic, for the most part, because most kids turn out fine, is to unwind that and get them to relax and treat their kids like normal kids.”
Checking in on development
The NICU Follow-Up Clinic staff typically assesses children at important times in their development, as the brain grows in spurts — first at 4 months of age corrected for prematurity (calculated from the mom’s due date), 12 months corrected age, 2 years, and between ages 4 and 5, before they start school. Children who had special health concerns — leaving the hospital on oxygen, for instance — are seen sooner and their problems are managed as needed.
“A way I put it for the parents is that your baby doesn’t get any credit for coming out early,” Georgieff says. “The neuroscience way of saying it is early brain development appears to be very programmed based on time from conception and not very influenced by ‘on planet’ experience.”
Therefore, kids who are meeting milestones for their corrected age are progressing just fine, he assures parents.
At the first routine visit to the NICU Follow-Up Clinic at 4 months of corrected age, the child is seen by a nurse practitioner, physician, and occupational therapist for an examination of growth, development, and muscle tone.
“At that point we can, with a fair amount of certainty, reassure parents that your baby is not going to have cerebral palsy, your baby is not going to have severe developmental delays,” Georgieff says. “You can often rule out the major handicaps by about 4 months of corrected age.”
At the second routine visit at 12 months corrected age, in addition to checking the child’s health and growth, the staff assesses the child’s fine and gross motor development and brings in neuropsychologist Christopher Boys, Ph.D., to measure the child’s cognition and language skills.
At the third routine visit around age 2, Boys assesses the child’s cognition and ability to verbally express wants and needs. He also looks for and addresses early signs of attention problems, as preemies seem to have higher rates of attention deficits. By this age, Georgieff says, the team is able to start ruling out minor handicaps.
A fourth routine visit the summer before the child is scheduled to start school, around age 5, is designed to assess school readiness.
Boys likes to see NICU graduates in fourth grade, as well, when children are first asked to “read to learn and not just learn to read,” he says.
Many NICU graduates with good IQs do well in school up to this point, Boys says. But when a fourth-grader has trouble, teachers and parents may blame the child or attention deficits, when the issue could be a late effect of prematurity that has affected the part of the brain that controls high-end processing skills, he says.
“Teachers tell them to try harder, when in fact we have to help them try differently,” he says.
A pioneering U team
Ensuring the best outcomes for NICU graduates is clearly no simple task. At an academic medical center like the University’s, research plays a central role in acquiring the experience and expertise that’s critical to determining the best ways to care for children.
The NICU Follow-Up Clinic’s research arm, the Center for Neurobehavioral Development, has created and implemented a variety of unique tools to evaluate development and cognition in very young children, even in infants.
“That’s where the U of M has been a real pioneer,” Georgieff says. “We developed tools that would allow us to get, if you were, into the baby’s brain earlier, which then allows us to intervene earlier and improve outcomes.”
The multidisciplinary Center for Neurobehavioral Development works closely with the University’s Institute of Child Development — the top-ranked child development/child psychology program in the country, according to U.S. News & World Report — to develop and test these tools. And with the expertise of the University’s world-renowned Center for Magnetic Resonance Research and a strong neuroscience graduate program at its fingertips, the NICU Follow-Up Clinic is at the leading edge of understanding how preemies’ brains develop.
“You’re just not going to find anything like that [elsewhere],” Georgieff says.
“You need this marriage of a major neonatal intensive care unit like ours that also has people who study and are interested in brain development and child development,” Georgieff says. “For me, a major inspiration for going back into that intensive care unit and taking care of sick babies is seeing how well these kids do in follow-up.”
Emma Michael is one of the kids providing that inspiration. Since she went home last fall, Emma’s blood clot has dissolved, she no longer needs to be on oxygen, and she needs less and less medication. And she now weighs more than 11 pounds, a normal size for her corrected age.
The Michaels are grateful for the affirmation they’re getting at the NICU Follow-Up Clinic as well as the continuity of care provided by the people who know Emma and her special medical and developmental concerns best — the team that was with her since her early arrival.
“They’ve spent time with her. They just know the little things about her that are different,” mom Becca Michael says. “We’ve had a really great experience.”
Nicole Endres is managing editor of the Medical Bulletin.