Premature birth, otherwise known as preterm birth, refers to the birth of an infant after less than 37 weeks in the womb – an event that accounts for 10 percent of neonatal mortality, or approximately 500,000 deaths worldwide each year. Even in the United States, where many infections and other causes of neonatal death have been drastically reduced or eliminated, premature birth remains the leading cause of neonatal mortality.
While significant progress has been made in the care of premature infants, ensuring their survival in the short term, the same cannot be said for research into reducing the prevalence of preterm birth. Elusive, with subtle warning signs spread throughout the gestational process, premature birth appears to have multiple possible factors associated with it, each contributing its own piece to the problem.
While the key factor in premature birth still remains a mystery, modern medicine has continued to give these newborns a fighting chance for a normal life. As neonatal survival has improved, the focus of therapeutic interventions directed at the newborn has changed to reduce longterm disabilities, those related to brain injury in particular. Recent studies have demonstrated that premature infants carry a higher risk of disabilities, including cerebral palsy, neurological disorders, disabilities of vision and hearing, and even epilepsy.
To see how therapists are responding to the healthcare advances available for premature infants,
Therapy Times hosted a “Therapy Roundtable,” bringing professionals across several specialties together to shed light on how they are meeting this problem in the neonatal intensive care units across the country.
Round Table Therapists:
- Michele Hardy, OTR, pediatric occupational therapist at Children’s Mercy Hospital in Kansas City, Mo.
- Katherine Frontier, MS, CCC-SLP, pediatric speech-language pathologists at Masters Family Speech and Hearing Center at the Children’s Hospital of Wisconsin in Milwaukee.
- Christia Arsenault, RRT, a respiratory therapist at Phoenix Children’s Hospital in Ariz.
- Deborah Wessel, PT, a pediatric physical therapist at Santa Barbara Cottage Hospital in California.
- Mary Greco, CCC-SLP, a pediatric speech language pathologist at Santa Barbara Cottage Hospital.
- Annette Annesley, PT, a physical therapist in the NICU at Cardon Children’s Medical Center in Mesa, Ariz.
- Stephanie Hall, OTR/L, SWC, a pediatric occupational therapist at Santa Barbara Cottage Hospital.
- Lisa Hegarty, RRT, RCP, clinical manager of the Pediatric ICU at Banner Desert Medical Center in Mesa, Ariz.
- Elzabeth Brown, OTR/L, occupational therapist at Children’s Healthcare of Atlanta at Scottish Rite in Georgia.
Therapy Times: What are some of the developmental differences between preterm and normal term infants?
Hall: Premature babies may weigh anywhere from just over 1 pound to around 5 or 6 pounds, depending on the length of the pregnancy. They have less fat than a full-term baby and smaller muscles, and because of this, they may seem skinny or bony, especially around the ribs. Their skin is softer and thinner and may be covered with a fine light hair. Also, because the muscular reflexes are usually acquired late in pregnancy, the baby’s movements may seem shaky or jerky.
Annesley: Preterm infants are at greater risk from the effects of gravity on their systems; they do not have the musculature to move well against gravity or the muscular endurance to sustain postures against gravity. An infant that is immobile and or malpositioned will experience changes that can affect their ability to meet the demands of their environment and future motor skill acquisition.
Hegarty: These infants are also at risk for intraventricular hemorrhage, from the pressures needed to ventilate them, which can lead to significant brain damage. In addition to these risks, the babies may also develop a perforated bowel from the inability to take full feeds or may aspirate feeds into the lungs when attempting to feed. Also, premature babies have difficulty maintaining and regulating their own body temperatures.
TT: When does your specialty enter into the infant’s care?
Frontier: It certainly varies, based on the infant’s needs. As a speech language pathologist, I think feeding development really starts to come into play by probably 32 to 33 weeks gestation. However, we always consider that a coordination of sucking, swallowing, and breathing does not become an integrative skill until 34 to 37 weeks gestation. It’s important for physicians, as well as families, to understand that while infants might be ready to start doing some trials with feeding, they may not be able to fully integrate all of those skills together for several weeks.
Hardy: Physical and occupational therapists are not present at the birth or soon after birth. We are consulted at various times after baby is admitted to the Intensive Care Nursery. However, PTs and OTs may be consulted early on to assist with providing positioning recommendations for head shaping or body positioning and range of motion, if there are concerns in this area.
Hegarty: Respiratory therapists are on the scene at delivery in all premature deliveries, as well as for any high-risk deliveries. These would include any deliveries where the lives of the mom or baby are at risk, as well as for all C-section deliveries. The presence of RTs at delivery has shown to improve outcomes for these babies by decreasing the delay in care.
Brown: The youngest I have seen is 30 weeks gestation; the child was born at 24 weeks and was 6 weeks old when we got involved. We worked with nursing as well as family to educate on positioning to mimic in utero positions of flexion/hands to midline/hips flexed. We also addressed signs of stress with the parents and very basic neurological development in terms of how to create the best possible environment.
TT: What are some of the common interventions you provide to the infant?
Greco: Feedings in the NICU are performed in a multidisciplinary manner and often include SLPs and OTs who have swallowing certification and advance competencies in the NICU. These are the first disciplines to assess the baby’s ability to safely feed orally. Parents of these infants will need practice to feel safe and competent feeding their babies. The feeding specialist’s role in the NICU may be in facilitating parents to support their baby’s sucking, swallowing, and breathing by recommending the appropriate bottle/nipple, flow restriction, and or “pacing” for optimal feeding.
Arsenault: Intervention, of course, depends on the infant. We have had preemies that are 24 weeks and all they might need is a little oxygen, or on the complete other end, they might need ventilation. You never know with these infants. One thing that is pretty consistent with infants under 32 weeks is that they generally receive surfactant. Since most of their lungs are underdeveloped, they need help breathing; we administer surfactant to help break up the surface tension in the lungs.
Wessel: Positioning is an important consideration in order to promote normal development. Prone position facilitates physiological flexion and should be promoted when the baby is less than 40 weeks gestation. Nests can be used in sidelying, prone, and supine to promote symmetry and coming to midline. Handling is also a valuable treatment intervention to help the baby’s immature nervous system adjust to its environment. Gentle compressions to the joints promote bone mineralization and position changes with handling promote stable vitals as the baby’s nervous system matures.
Annesley: The youngest of the babies, I am assessing at all times – observing their threshold for stimulation through the neurobehavioral cues and supporting them in those responses that can signal stability or stress. With the older babies, I may use
Neuro-developmental Treatment, TAMO, infant massage, and kinetic stimulation as examples to support the goals that I establish with the parents. I also use tummy time, rolling, supported sitting, and weight shifts. I do a lot of treatments in my lap as getting on the floor as I would with a toddler is not possible.
TT: What are some of the challenges and obstacles therapists face in working with these fragile patients?
Brown: We are striving to create “normal” in the course of a very atypical experience. Our biggest obstacles are the generally small nature of our kids, as well as their neurological immaturity and sometimes resistance to touch. We have difficulty achieving “normal” because surgical interventions – recent ostomy bag placement, prolonged intubation, neurological surgeries – prohibit certain positions.
Frontier: There certainly could be issues with the coordination of sucking, swallowing, and breathing, which could – if there’s any incoordination or disorganization with those skills – put the infant at risk for sequelae of aspiration. We try to manage that first with just some therapeutic techniques, such as breathing breaks, changing the bottle or nipple to help control and manage the rate of liquid flow. Unlike the adult population, we often don’t use thickeners due to issues with GI motility, and other risk factors such as necrotizing enterocolitis.
Hardy: A baby that has difficulties with swallowing during feeding may present with decreases in heart rate or bradycardia, decreased respiratory rate, and/or oxygen desaturation. They may also have increased congestion, stridor, and/or wet sounding voices – these babies may be showing signs of aspiration. There are also a number of babies that show none of these signs, yet are having difficulties with oxygen weaning and slow progress with feeding and may be silently aspirating.
Hegarty: Aspiration can lead to respiratory failure and the need to mechanically ventilate. Respiratory failure can lead to respiratory distress syndrome, which can ultimately lead to many more complications and a difficult route for these infants, resulting in decreased lung compliance, atelectasis, and – in extreme cases –the need for extracorporeal membrane oxygenation. The most common respiratory complication is retinopathy of prematurity, leading to vision problems and long-term lung problems from prolonged ventilation and use of oxygen.
TT: How is therapy hampered by the constrictions of the NICU environment?
Annesley: In the womb, the sounds that the infant hears are muffled by the mother’s body and are usually rhythmical and more predicatable. The NICU environment is filled with loud, often unpredicatable, non-human sounds. Preterm infants are asked to start processing visual information much earlier. There is literature out that speaks to the systems “competing” with each other in a manner that would not occur in the interuterine environment. Name a system and it will be different and need to be supported until the infants can regulate themselves.
Hall: Many of the processes and stimulation needed to facilitate brain development can result in adverse effects if exposure is at the wrong time in development or the level of intensity is not appropriate. The NICU environment can have very adverse consequences for healthy neurodevelopment and require both a developmentally supportive environment and developmentally appropriate care practices.
Greco: Many transitions have occurred in our NICUs over the years. Not only have the physical environments of these “stark” and very “clinical” centers changed, but developing care of these infants has evolved into a more “relationship based” family nurturance setting.
TT: In what way do therapists foster the parent-child connection amid the interventions and ongoing therapy regimens?
Wessel: Parent bonding is a challenge in the NICU environment, especially when the baby is in an isolette. Parents often aren’t able to hold their baby after the birth and, if they can, are limited by restrictions in the baby’s tolerance to its external environment. The baby may only be able to tolerate cupping, where the parents place their hands on the baby’s head and buttocks without actually taking the baby out of the isolette. Depending on the fragility of the infant this may also be limited in terms of time and frequency.
Arsenault: The thing we try to keep in mind is these preemies are still supposed to be in the womb, so as little stimuli the better. Most parents with full-term babies love to hold them and stroke their hair, hands, arms, and just really soak in the whole new baby experience. With our smallest of babies, this is way too much stimuli. Instead, we use just single touches – no stroking, just firm pressure and soft voices.
Frontier: We encourage parent involvement from day one with "kangaroo cares," which is skin-to-skin contact between the infant and their parents. It helps with bonding and, when the infant is able, they can go right to breastfeeding. The kangaroo cares can be mother or father, so they have to take off their shirts. Fathers are really encouraged to help the infants with mouth care using tastes of breast milk or formula to practice sucking.
Brown: We try really hard to educate our families about appropriate milestones, the power of touch – during designated touch times – talking to their child and letting them know the parents’ voice. Most are so afraid of the environment that they don’t want to “break” them or do something “wrong.” After checking with nursing, I encourage families to simply lay their hand on the top of the baby’s head, or place a finger in the baby’s hand. Most are so joyful that the baby will hold their hand.
Hardy: Parents are also encouraged to read to their babies, who respond to the sound of their parents’ voices. Babies have a well-developed sense of hearing and can distinguish different noises, tones, and inflections of speech. Reading to their babies helps with bonding as babies are hearing their parents – voices can be very comforting.
TT: What personal toll does working with premature infants have on the therapist?
Hardy: The best part about my job as an OT is being able to teach parents how to feed their babies and learn their cues and how to respond to them, and also how to hold and move their babies to work on their range of motion and developmental skills. The toughest part of my job is telling a parent that their baby is not safe to feed by mouth. Feeding is one of the most natural and loving ways to take care of a baby and taking away this precious part of being a parent is always difficult.
Annesley: I love working with the babies and families. Just being premature does not mean they will definitely have problems, so it’s not necessarily gloomy. I do work with babies that have a diagnosis that would suggest that their lives will have difficulty, which is sad, but a child is so much more than their diagnosis – their value is in who they are not what they have.
Hegarty: At the other end of the spectrum, these babies may not survive to go home, and the loss of any baby takes a huge emotional toll on the staff, even in those times when you may think that death brings peace to that baby. It is in watching and dealing with the parents’ grief that we have many of the difficulties we encounter, because the depth of their grief is something we do not take lightly and is hard to watch.
Arsenault: Some days are harder than others. Some patients and families you get so attached to. When they experience a loss, so do you. I have gone home some days and just cried the whole way because a baby and family I love were hurting.
Brown: From my own perspective, it’s really hard to be around these kids, especially since my own pregnancy. At the end of the day, we just have to remember that we are giving these kids a chance at living their life to the fullest after our physicians have worked so hard to keep them alive! We may never know the full extent to how much we help a child or a family, but all we can do is our best and hope that is enough.
— Bob Stott