The NICU Follow-Up Clinic: Everything Premature Babies Need To Get the Best Start in Life

Te’Niyah Lane, the daughter of Laquita King and Terence Lane, came into the world on Aug. 24, 2022, born prematurely at 31 weeks after a difficult Cesarean section. She suffered a brain hemorrhage at birth, and was limp and not breathing after delivery.

The neonatology team at McGovern Medical School at UTHealth Houston intubated her at three minutes of life, and eight minutes later she was given cardiopulmonary resuscitation for a slower-than-normal heartbeat. After nearly 30 minutes of intensive care in Labor & Delivery, she improved and was admitted to the hospital’s Level IV Neonatal Intensive Care Unit.

Te’Niyah spent 43 days in the NICU, much of it on a feeding tube and respiratory support. She left the hospital on Oct. 5 with her parents and an appointment at the hospital’s NICU Follow-Up Clinic scheduled five days later.

“Children born prematurely are at risk for intraventricular hemorrhage, apnea of prematurity, neonatal sepsis, and retinopathy of prematurity, among many other disorders. Later in life they may experience other health problems, including learning disabilities, developmental delays, hearing and vision problems, or cerebral palsy (CP),” says Nick Russo, MD, director of the NICU Follow-Up Clinic and director of pediatric movement disorders and neurodegenerative diseases in the Department of Pediatrics, Division of Child and Adolescent Neurology at McGovern Medical School, where he is an assistant professor. “Our clinic team provides coordinated multidisciplinary care that can change the lives of children who are at risk for these disorders.”

The NICU Follow-Up
Clinic’s multidisciplinary
team follows each
patient’s growth and
developmental milestones.
Babies and their parents
leave the hospital
with their follow-up
appointment already set.

NICU graduates with health issues less serious than Te’Niyah’s – and even those with no apparent problems – go home with their followup appointment scheduled a few months later to give them access to specialized neurological care if needed. “Many families referred to us from the NICU are not sure why they’re here,” Russo says.

“We follow these children closely and if, after a couple of visits, we notice some tightness in the arms or legs or preferential use of one side over the other due to weakness, we get them started in therapy early. It’s not always obvious at the onset that a child has CP. Earlier recognition means we can establish care with physical and occupational therapy sooner, which leads to better outcomes. We can refer those with CP to our Texas Comprehensive Spasticity Center when they’re two years of age for further management.”

The NICU Follow-Up Clinic is staffed by a multidisciplinary care team of pediatric neurologists with various subspecialties, an occupational therapist, a physical therapist, and a social worker. “We follow our former NICU patients as they grow and track their developmental milestones,” says Sarah Lund Wilson, MD, an assistant professor of pediatrics in the Division of Child and Adolescent Neurology at the medical school. “Working as a team, we can offer these children comprehensive and holistic medical care. We also work closely with the pediatric neurosurgery team, monitoring for urgent and emergent neurosurgical conditions such as hydrocephalus that may have evolved since their previous neurosurgery appointment. We monitor head circumference between their neurosurgery visits. If it increases, we send them to the emergency department, where they’re seen by the pediatric neurosurgical team.”

In addition to Wilson, who sees children with autism and neurodevelopmental disorders at the clinic, and Russo, who initiates genetic workups for neurometabolic and neurogenetic disorders, the core physician team includes Stuart Fraser, MD, an assistant professor in the Division of Child and Adolescent Neurology whose areas of expertise are pediatric stroke, arterial ischemic stroke, arteriovenous malformations, cerebral venous sinus thrombosis, moyamoya disease, and cerebral palsy. Other pediatric specialists are called to collaborate on cases as needed.

Early in her care Te’Niyah Lane saw Layla Ghergherehchi, MD, assistant professor and director of pediatric ophthalmology in the Ruiz Department of Ophthalmology and Visual Science at McGovern Medical School, who is treating her for retinopathy of prematurity. She also saw pediatric orthopedic surgeon Surya Mundluru, MD, an assistant professor in the Department of Orthopedics at the medical school, for developmental dysplasia of the hip, which is being treated with a hip abduction brace. She wears an ankle-foot orthosis on her left foot to improve weakness in the ankle, and the clinic’s physical therapist Christine Hill, PT, and occupational therapist Anna Clearman, OTR, MOT, CLT, are working on strengthening her muscle tone to prevent any abnormalities.

Te’Niyah is also being monitored by Manish N. Shah, MD, FAANS, for a subdural hematoma and injury to the left cerebellum discovered on MRI when she was six weeks old. Shah is the William J. Devane Distinguished Professor and associate professor of pediatric neurosurgery at the medical school and director of the Texas Comprehensive Spasticity Center at UTHealth Houston Neurosciences.

“She has developmental delays in her motor skills, but is actively making progress,” Wilson says. “She also has torticollis with her neck tilted to the left side and has been given physical therapy through Early Childhood Intervention Services, a program for children under age three run by the State of Texas. We have great communication as a team, so for instance, I’m up to date on how she’s doing in therapy.”

“Te’Niyah was home for only a few days and then we started almost back-to-back appointments with all kinds of specialists at the NICU Follow-Up Clinic,” Laquita King says. “The doctors are wonderful and have helped us get her started on the right track with everything she needs.” Much of what happens in the clinic is detective work, according to Russo. “For some conditions there is a long diagnostic odyssey,” he says. “Emotional intelligence and empathy has gotten me just as far with these patient families as a prescription. If we don’t know the answer, I tell them we will keep working until we find it. We refer them to other specialized therapy, such as speech, vision, and audiology when appropriate.

This high level of care for NICU babies helps give parents peace of mind. Statistically, babies born prematurely are at risk of cerebral palsy or developmental delay. Some, like Te’Niyah, have had a brain bleed in utero or during delivery. We can monitor and treat their condition and, as we follow them, for injuries that may not become
obvious until they are several months old.”

Russo and the team also screen patients who may have been incorrectly diagnosed with cerebral palsy but instead may have underlying stroke risk factors or genetic conditions that mimic CP. If the diagnosis is CP, ongoing care may be complex and have familial testing implications. Patients typically are followed at the clinic until they are two years of age and then referred for follow-up to pediatric neurology clinics at Children’s Memorial Hermann
Hospital and UTHealth Houston.

“Most parents’ No. 1 concern after discharge from the NICU is to ensure that their child is developing normally without neurological problems,” Russo says. “What we offer is a package deal: excellent care in the NICU and immediate long-term follow-up to catch any problems that may arise early enough to ensure treatment that will help the child succeed. What we offer is access to a team that is passionate about the development and neurological care of their children and a more personalized feel backed by the resources of a large institution. We consider ourselves a close-knit family.”

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