Overview of Prematurity and Associated Conditions

Editor's Note: This text is a transcript of the course Overview of Prematurity and Associated Conditions, presented by Rhonda Mattingly, Ed.D, CCC-SLP

Learning Outcomes

After this course, participants will be able to:

• List 3 short-term complications associated with prematurity.
• List 3 long-term complications associated with prematurity.
• Describe 3 ways early experiences of the premature infant impact development.

At-risk Populations for Prematurity

Let's first talk about who is at risk for prematurity or to have a premature delivery. Women with low income, women of color, women younger than 20, older than 40, women who themselves were born premature, women with a history of previous premature delivery, women with multiple pregnancies, and women with uterine/cervical abnormalities.

Additional Risk Factors

Some additional risk factors for having a premature delivery include smoking, alcohol, substance use, infection, stress, trauma, unintended pregnancy, and chronic health conditions, such as diabetes, high blood pressure, in-vitro conception, and repeated miscarriages. The reason in-vitro conception is an additional risk is twofold. In-vitro conception usually occurs because there is difficulty getting pregnant, and it often will end up with multiple fetuses, which can cause preterm births. 

Incidence and Statistics

It is estimated that about 11% of births, on average, worldwide are preterm.  This translates to about 15 million preterm infants born yearly, which is 1 in 10 infants born preterm.  That's a pretty hefty population. Prematurity is also associated with approximately 1/3 of infant deaths in the US. It accounts for 45% of children diagnosed with CP, 35% of children with vision impairment, and about 25% of children with cognitive and hearing problems. That's a very high association with many people probably on your caseload.  

Classification

Gestational Age

We must also consider the classification of preterm.  Historically, research has suggested that late preterm, an infant born between 34-36 weeks, has much less difficulty than an infant born much earlier, and that is still true. That being said, the late preterm infant does have more problems than we once thought, and I'll discuss that later. 

What is late preterm? Again, it is an infant born between 34-36 weeks. Very preterm is an infant born at less than 32 weeks, and an extremely preterm infant is born at or below 28 weeks. Extremely preterm infants have a higher mortality rate if born before their 25th-week gestation and about 50% have much more difficult long-term issues. Therefore, the later the baby can be kept in the womb, the better under most circumstances, unless something is causing distress within that situation. An infant born 37 weeks or older is considered a term.  However, a term pregnancy is typically considered to be 40 weeks by OBGYNs.  

Birth Weight

Birth weight is extremely important in terms of development. Low birth weight is considered less than 2,500 grams, which is about 5.5 pounds. In functional terms, that's about a full two-liter soda bottle.  Very low birth weight is a birth weight that's less than 1,500 grams. That's approximately 3.3 pounds and is about the heaviness of a steam iron. Extremely low birth weight is a birth weight of less than 1,000 grams. That's approximately 2.2 pounds and about a quart of milk.

Even for an older infant, meaning they're not as early in their preterm birth or if they're term (i.e., 37-38 weeks), birth weight is associated with many long-term and short-term issues. The lower the birth weight, the higher the probability that they will have some issues that can accompany that.

Adjusting for Prematurity

We have to consider this concept of adjusting for prematurity. Not every state does this, which is fine, but in our early intervention system in Kentucky, we adjust for prematurity. We do that by determining the gestational age in weeks. First, subtract that gestational age from about 40 weeks, which, again, is what is considered term. Then subtract the weeks of prematurity. Here is an example: 

• Olivia was born at 30 weeks gestation​
• 40 weeks - 30 weeks = 10 weeks premature​
• Olivia is currently 16 weeks chronologically​
• 16 weeks (chronological age) – 10 weeks premature = 6 weeks adjusted

Currently, Olivia is 16 weeks chronologically, meaning she has been out of her mom's womb for 16 weeks. So, we take her 16 weeks chronological age and subtract how many weeks preterm she is, which is six weeks adjusted.

Why does that matter? It actually matters a great deal.  We typically only adjust up to about 24 months, for one thing.  But the other point is that over the years, I have had many clinicians say, "I'm working with this infant who is 12 months old, and they're not sitting up or crawling or taking their first steps (those milestones associated with a 12-month-old).  My first question is usually, "Well, how early were they?" Typically, we learn that no one has adjusted for their age. So if the child is four months preterm, they are really an eight-month-old, not a 12-month-old.  At that point, you need to think about them in terms of what an eight-month-old can do.   We also have to remember that with prematurity, many atypical factors occur that may further exacerbate early birth and fragility.  

Associated Diagnoses

Short-Term Complications of Prematurity

Many associated diagnoses have an impact on feeding development as well as other areas of development. Short-term complications of prematurity can include hypothermia, respiratory complications that later resolve, cardiovascular abnormalities, intraventricular hemorrhage, necrotizing enterocolitis, infection, and retinopathy of prematurity.

Hypothermia.  Hypothermia is rapid heat loss due to a premature infant having a relatively large body that can't produce enough heat relative to what the body systems have to do.  Hypothermia is more likely to occur with infants of lower birth weight and those who've been delivered via C-section. It's associated with lower Apgar scores that measure how the infant is breathing and how they present at birth. Usually, it's difficult for a preterm infant to manage everything because they should still be in their mother's womb. The mom should be doing everything for them. They should not have to use their lungs. They should not have to keep their own body warm. They should not have to worry about digesting food. This all should be done within the womb. So when an infant is born too early, and they have rapid heat loss, they are trying desperately to do multiple things that they really are not prepared to do yet.

Hypothermia can also contribute to metabolic disorders. It's associated with increased mortality in preterm infants, as well as IVH and pulmonary insufficiency. 

Respiratory Complications. Respiratory distress syndrome (RDS) can occur in preterm infants. There is also a higher incidence of bronchopulmonary dysplasia (BPD) and apnea of prematurity. A surfactant deficiency causes respiratory distress syndrome. Surfactant is a mix of fat and proteins made in the lungs and coats the alveoli to keep the lungs from sticking together when the baby exhales.

BPD is synonymous with chronic lung disease. There are specific criteria for that particular respiratory complication that go along with how long the infant depended on oxygen. Essentially, bronchopulmonary dysplasia is more of a chronic problem that occurs due to treatment for respiratory distress syndrome. 

Apnea of prematurity is the cessation of breathing. It occurs in about 25% of preterm infants. The incidence increases with a decrease in gestational age. So, apnea of prematurity is seen more often in an infant at 30 weeks than in an infant born at 34 weeks.

How do respiratory complications impact an infant in the long term? A study reported that bronchopulmonary dysplasia was associated with adverse neurodevelopmental outcomes at nine and 12 months, and was more prominent in preterm infants with a BPD diagnosis versus those without it (Lin et al., 2017). There were greater adverse neurodevelopmental problems at nine and 12 months in that population with the BPD.

A second study reported that preterm infants with BPD have well-documented feeding difficulties (Mizuno et a., 2007). Even in the absence of BPD,  a baby with RSD trying to feed is similar to climbing 15 flights of stairs as fast as you can carrying a big, heavy backpack on your back, and when you get to the very top, you have to chug water while trying to keep your body temperature from exploding.  It's no surprise that they have so many feeding difficulties. It's very difficult to suck, swallow, and breathe when you can't breathe in the first place.

A third study found that when preterm infants with BPD were compared to healthy preterm infants without BPD, those with BPD had higher respiratory rates, larger decreases in their oxygen saturations, and lower performance on sucking measures (Barlow, 2009). This means their sucking is not as efficient. That is likely due to difficulty latching and sucking when their respiratory rate is too rapid, and they're having problems keeping their stats up. So, it makes sense that it is difficult, and that can have a long-term impact.

Cardiovascular Abnormalities. One cardiovascular abnormality is patent ductus arteriosus (PDA). Preterm infants can also have systemic hypotension, which is a decrease in systematic blood flow below accepted values. A population-based study revealed that premature infants are twice as likely to present with congenital heart defects, and that's even higher for anomalies of ventricular outflow tract (Laas et al., 2012).

There are multiple reasons why that is important. But one reason is based on a study from a few years ago that compared the energy and caloric needs of children with ventricular septal defects to children without the defect. Children with ventricular septal defects that were not being managed or treated adequately needed a substantial increase in calories compared to their counterparts to meet the same energy needs. So, it can be very taxing.

Many children with syndromes, in addition to being preterm, can have many congenital heart defects. Consider, for example, the child with low muscle tone and a ventricular septal defect or another cardiovascular anomaly. It's quite difficult for that child to take in food when they are low-tone, have respiratory problems, and have congenital heart issues.

Patent ductus arteriosus occurs after birth. In utero, the infant does not use their lungs, so blood flows through the patent ductus arteriosus. After birth, it will close so that the lungs can be used and allow blood to flow throughout the body. However, with premature infants, oftentimes, the PDA does not close, or it may take a few days. The pediatrician can provide medication, or surgery can be performed, but most of the time, it will close. However, it is much more common to see infants born with the patent ductus arteriosus still open because they are preterm. Usually, it's pretty manageable with medication, if at all necessary.  Although PDA is not usually a big issue, some cardiovascular diagnoses are quite impactful and require surgery at birth or shortly after birth. Some require multi-stage surgeries.

What do we know about the impact of cardiovascular diagnoses on infants and children long term? Children with congenital heart defects have an increased incidence of deficits in intelligence, visual motor integration, and psychosocial functioning (Sterken et al., 2016). Another study found one in five children with congenital heart defects have delays in multiple domains: poorer developmental outcomes, longer hospital stays, poorer linear growth, feeding problems, and socioeconomic risks (Mussatto et al., 2015). A third study found an increased risk for neurodevelopmental impairments but did not find any issues with intelligence in their cohort (Massaro et al., 2008).

If we think about how children develop and learn and create their personalities, their occupation is to play. That is what they're meant to do. We know they learn about exploration and language use through play and interaction. But if a child had surgery at birth, they won't feel good for a long time. They may have multi-stage surgeries, so they're still not going to feel good. If we know that they will have longer hospital stays and feeding problems, then they will also be in and out of the hospital more frequently and be more susceptible to a myriad of problems.

Every time that child goes into the hospital, I do not count that toward development because they're not exploring their environment and they're not interacting in a typical way with their families. They are possibly stuck in a hospital bed, perhaps attached to a feeding tube, oxygen, etc. You can see where that would be an issue for them long term, especially if there is repeated hospitalization.

Intraventricular Hemorrhage (IVH). This is the most common neuropathological lesion for a preterm infant and is basically bleeding into the ventricle. It rarely occurs at birth. It typically occurs within the first three days of birth, and it will occur more frequently in infants born before 32 weeks' estimated gestational age. The smaller and the more premature an infant is, the higher the risk because the blood vessels are not fully developed, and they're extremely fragile. Again, it usually occurs within the first three days versus at birth because of the fragility of the blood vessels.

IVH can be categorized into four grades. Grade I is considered mild. Grade II is moderate. Grades III and IV are severe. However, in the past few years, we have realized that children with Grade I and Grade II can have problems that we used to not appreciate as much.  The literature shows that even children or infants who experience a Grade I or Grade II, even if it resolves later, can have more difficulty later on.

What is the impact of an IVH? IVH diagnosis has been associated with significantly lower mean psychomotor and mental developmental indices and increased incidence of CP and visual impairment. An IVH diagnosis in an infant born less than 28 weeks gestational age has poorer outcomes than children who are born 28 weeks gestational age or later who do not have IVH. Outcomes are worse with the grade of IVH, but we know that lower grades of IVH are still associated with higher percentages of negative outcomes compared to controls without intraventricular hemorrhage.

Necrotizing enterocolitis (NEC). I spent about 12 years in a very large NICU, and I remember the infants with necrotizing enterocolitis so well because it is a terrible way for a little human to begin his or her life. It can occur in a term infant but is usually because of a preexisting illness, congenital heart defect, sepsis, etc. 

The incidence decreases with increasing gestational age. It's typically more of a preterm birth-type association, but again, it can occur in a term birth. It's one of the most common GI emergencies in newborns, occurring one in three per 1,000 live births. This disorder is essentially necrosis of the intestinal mucosa. It's dying off in certain parts and is damaged due to bacteria. 

If you're treating someone with a history of NEC, it's not unusual to have to monitor their progress closely. They may be taken off enteral feedings and switched to parenteral nutrition, along with receiving heavy-duty antibiotics. When the child or infant is thought to be ready to resume some level of digestive system function, a gradual reintroduction of nutrition, typically around 2 cc per hour, may be initiated.  The SLP might also be involved in their care, and if we see that the infant is not tolerating the feedings well, we may have to start the entire process all over again. If you have a child with a history of necrotizing enterocolitis, it shouldn't be a surprise if they have feeding issues, considering how their relationship with feeding and food has been.

There are numerous signs of this disorder. Systemic signs include apnea, respiratory failure, lethargy, poor feeding, temperature instability, hypotension, and bacteremia (i.e., bacteria in the bloodstream). Abdominal signs include a distended abdomen, gastric retention, tenderness, vomiting, diarrhea, rectal bleeding, and bilious drainage. As we know, feeding development is largely based on interaction. It is based on their relationship with food, and we want that to be positive. But, preterm infants who are born with necrotizing enterocolitis and potentially have multiple bouts of surgery, medication, and cessation of food going through their digestive system this is the beginning of their relationship with food. So, it's not shocking that they don't want to jump back on the bandwagon once they're allowed to have breast milk, formula, or whatever they're introduced back to.

The recurrence of NEC is about 4 to 10%. Mortality can be 15 to 63%. Infants can have intestinal strictures and stoma complications. Short bowel syndrome can occur due to surgery to remove some of the necrotic bowel. Neurodevelopmental impairments are higher in this population, and a growth delay is found in approximately 10% of infants/children with NEC. 

The impact of NEC includes worse neurodevelopmental outcomes compared to preterm infants who do not have NEC. Infants with advanced NEC who need surgery will have an increased risk of neurological impairment, and about 50% of neonates with NEC have long-term neurodevelopmental problems (Rees et al., 2007).

In one study, premature infants with NEC were hospitalized 60 days longer if surgery was required and 20 days longer than their cohorts, even without surgery (Neu & Walker, 2011). Again, when an infant or child is hospitalized, that is not a typical developing time. These infants are hooked up to all kinds of things. They're unable to interact with their family. They're not having typical experiences. It is no surprise that they have bigger issues.  Finally, infants with NEC are at greater risk for motor impairment (Shah et al., 2008). 

NEC is a major diagnosis to consider if you have someone on your caseload who has this in their history.

Infection/Sepsis. Late-onset sepsis (occurring after three days of life) is a common complication. Also, infection and sepsis are associated with longer hospital stays and complications associated with increased risk of infection. If an infant has BPD, PDA, NEC, prolonged intravascular access, etc., there are more complications with infection and sepsis. The earlier infants are born, the more likely they are to have infection and sepsis. So, there are multiple layers of negativity.

What is the impact of having infection and sepsis as a preterm infant? There's a higher incidence of CP in children who had isolated episodes of early-onset sepsis and for those who had isolated episodes of late-onset sepsis when compared to those without either​. There's also a higher incidence of CP in children who had both early and late-onset sepsis when compared to those who did not have either. Additionally, no association was found between infection and cognitive impairment. These findings are from a large study conducted on 2,665 live births (Mitha et al., 2013).

Retinopathy of Prematurity. The next comorbidity or associated diagnosis with prematurity is retinopathy of prematurity. This used to be far more prevalent than it is now. It still can happen, but we've learned that the oxygen that infants used to get in large doses was a huge player in the development of retinopathy of prematurity.  Today, doctors are very controlling of how much oxygen an infant gets because we know that it can cause damage.

This is a vascular disorder that occurs because of the incompletely vascularized retina of preterm infants. It typically emerges around 34 weeks postmenstrual age and advances irregularly until about 40 to 45 weeks. It can resolve spontaneously, but it can also result in vision impairment. I can recall feeding some infants who were on fairly high doses of oxygen, and they were very aggressively weaning them because they were worried about this retinopathy of prematurity. Occasionally, those infants would not feed well because they needed that oxygen. So, periodically, we were permitted to increase the oxygen just for feeding, and then it was turned back to a lower dose. We didn't want to risk them having any damage as a result.

Vision impairment (VI) as a complication of retinopathy of prematurity interferes with gross and fine motor development. There's a delay in head control. Postural instability is present until about 12 to 14 months. There could be a delay in bringing hands to midline and increased tactile defensiveness.  Think about how driven infants are by vision. For example, they see the dog across the room. That motivates them to go to him and pull his tail or put their face in his fur. They see Mom or Dad across the room. That is very motivating for them to want to move.

Also, consider if you cannot see or have low vision, how that impacts gross motor skills, defensiveness, or appreciating touch. A study conducted by Bartlett and colleagues in 2002 reported vision impairment may result in delays and deficits in motor, linguistic, cognitive, and social-behavioral development. Again, infants and children's occupation is to play.  If one of their senses is diminished or altered, then it can impact all of these areas of development.

Long-Term Complications of Prematurity

Long-term complications of prematurity include increased recurrent hospitalizations, increased long-term neurodevelopmental impairment, chronic health problems, growth impairment, and impairment of lung function. 

Increased Recurrent Hospitalizations

The most common causes of recurrent hospitalizations are respiratory disorders, infection and asthma, gastroesophageal reflux, and gastroenteritis. Every time an infant or child goes into the hospital, their development is not being supported. Maybe Mom and Dad can't be there, or the caregivers can't be there, or there are three or four other children at home.  That will diminish how they can interact with their family, but it will also impact their opportunity to explore, interact, and be motivated to have communication and language. Of course, if you don't feel well, you have infections, asthma, reflux, and gastroenteritis, which also impacts your occupation of play; you're not going to want to because you're not in your home environment.

What is the impact of recurrent hospitalizations, according to the literature? A few studies suggest that even though weight gain, physical growth, and medical stability can be achieved at the time of discharge, children are still vulnerable to developmental delays because they are not having typical experiences (Catlin, 2008; Pao, Ballard, & Rosenstein, 2007).

A vent or feeding tube dependence and exposure to invasive procedures may further limit a hospitalized child (Glader & Palfrey, 2009). Think about something painful in your life, such as a bad dental appointment, and how that limits your willingness to relax in that environment. It is the same situation for these infants and children, especially when they may not have the cognitive status at such an early age to understand what's going on.

Another impact of recurrent hospitalizations is stress in early childhood, which reduces the potential for brain growth (Holt & Mikati, 2011). Motor development can also be impacted because there is a lot of restricted space in a hospital. These children are typically stuck in a room or a bed.

It's also important to consider homeostasis. An infant needs to develop homeostasis to attach to their caregivers.  However, it's difficult to have homeostasis and to find calmness when you're going through negative hospitalizations and invasive procedures.

Research also suggests that although children may not recall the events of their hospitalization accurately, they can display symptoms of PTSD up to one year post-discharge (Rennick & Rashotte, 2009). An additional study showed that disrupted and limited contact between the primary caregiver and the child impacts that sense of attachment and security (Jaegermann & Klein, 2010). I will add that if you are seeing a child in the home or in an outpatient setting who was preterm and they have a lot of increased hospitalizations, the parents are sometimes put in such a difficult position if they have other children as well. They can't necessarily stay at the hospital with the sick child, and it can be very disruptive to the relationship.

Longitudinal studies have also shown that institutionalized children reveal attention-seeking behaviors and increased risk of long-term social-behavioral delays (Johnson et al., 2006). It's not quite the same as recurrent hospitalizations, but certainly, some children are hospitalized for lengthy periods and over and over again.

Neurodevelopmental Impairment

 This includes cognitive skills, motor deficits, sensory impairment, and behavioral or psychological problems. Preterm infants, as compared to full-term infants, are more likely to have those neurodevelopmental disabilities. The risk of that impairment increases with how early they were born.  There is a greater incidence of these various impairments in preterm infants. 

The literature suggests that general motor movement difficulties at term, or the equivalent of term, predict feeding problems at 12 months (Sanchez et al. 2017). So, if there are some motor problems at term birth, then that is predictive of feeding problems at 12 months. Feeding problems are also more common in children with lower cognitive, language, and motor scores, and higher depression and anxiety scores on the Bayley-III (Crapnell et al., 2015). Additionally, oropharyngeal dysphagia is linked to gross motor severity using the Gross Motor Functional Scale (GMFCS) but is present across all levels. We repeatedly see a link between motor and feeding problems and a link to how all of this fits together. It begins with prematurity.

Chronic Health Issues

Children with special healthcare needs are at risk for a range of poor psychosocial/educational outcomes (Forest et al., 2011). Additionally, pulmonary abnormalities are more pronounced in children with preterm birth and a history of moderate to severe BPD (Baraldi et al, 2009). The research also states that there is a circular pattern of feeding and swallowing problems that can result in chronic pulmonary or constipation problems, which further impacts feeding (Adams et al., 2014).  Children with chronic health issues have this pattern. They have feeding and swallowing problems, which can then result in chronic pulmonary problems and/or constipation, which then further impacts how feeding and swallowing take place. It's a vicious cycle. 

Long-Term Health & Educational Needs

According to the literature, neurodevelopmental impairment affects 35-50% of school-aged children who were born very preterm (Johnson et al., 2009). Fine motor and gross motor deficits are appreciated long-term in this population (deKieviet et al., 2009). Cognitive scores are 11-12 points lower in pre-term infants compared to their term peers (Kerr-Wilson et al., 2012). There is also a greater incidence of visual motor integration deficits (Geldof et al., 2012).

The Premature Infant: Early Experiences

Overall Experience

The premature infant is born with an immature brain, an immature nervous system, an immature GI system, and an immature respiratory system. There is also a lot more reflux in this population because their GI system is not developed when they're born.

Early life is in a NICU. It's not in the nursery like Mom, Dad, Grandma, Grandpa, Aunt and Uncle all planned. NICUs are much more developmentally sound than they used to be 25 years ago, but they're still not home. They don't smell like home. They don't provide the same opportunities as home, and they are places of high stress for families and infants. NICUs are full of atypical types of stimulation, pain, and interaction.

Additionally, a primary nurse might be taking care of the infant most of the time, as well as multiple other nurses interacting with that infant. Physicians come in, pick the baby up, look at the baby, and put the baby back. Therapists and volunteers might be seeing the baby as well. This is all very atypical of what would've happened if the baby was born closer to term and going home.

There can be a lot of pain associated with being in a NICU. Years ago, I was feeding an infant, and one of the surgical staff came in, picked up an infant in the crib next to me, did a rectal biopsy, wrapped the baby back up, and put them back in the crib. But, with a painful experience like that, had the mom or dad been there, they could have held and consoled the infant. However, the nurse was very busy with another infant; I was feeding a different baby, and no one was there to soothe the baby and provide some compassion. 

Finally, cues can be difficult for caregivers to comprehend. We know that infants develop cries that tell us, "Oh, I'm hungry," or, "I'm scared," or, "My diaper's dirty," etc.  However, some of those cues can be difficult for caregivers to comprehend in the NICU due to the infant's immaturity and the stress of the NICU.

Therefore, we have to remember when we are doing evaluations with these families years later and asking development milestone questions, many of these parents will not have answers.  At that time, they were concerned with whether or not their baby would survive or get through the next surgery.  These parents were living in a much different world that is an extremely high-stress environment. 

Stress and the Premature Infant

Equilibrium is pushed out of balance due to the NICU environment, which causes a lot of bodily and mental tension. During early development, stress is associated with long-term changes to neurobehavioral development. That means when stress occurs early, it can cause long-term changes in neurobehavioral development.

There is stress to trauma. The result of exposure to inescapable stressful events overwhelms a person's coping mechanism. Van der Kolk, in 1997, discussed how terror and isolation are the core of trauma. Those two factors can shape the brain and body in many different ways.  

Here is an example of an inescapable stressful event.  I know a NICU nurse who cares for infants with neonatal abstinence syndrome (they are born addicted to opioids).  These babies cry a lot until they are weaned off the opioids. It can be extremely loud and very stressful, depending on the situation.  The nurses have a room in the facility where they can go for about 15 minutes to sit in a recliner and reduce all of the overstimulation that they're experiencing as they're working. I actually thought about that from the perspective of the premature infant.  As adults, we know we need to do that, but the babies have no ability to do that. They can't get up and walk into a little room for some peace and quiet. That is an inescapable stress that they have to deal with for as long as they are potentially in that NICU, and it's extremely overwhelming for them.

Neuroprotection

Why do we have to think about neuroprotection? There are rapid changes in the brain in the last trimester. Pathways are created that are either positive or negative, and they are reinforced. Obviously, we want the positive ones to be reinforced and not the negative ones. Stress activates fight or flight and releases a lot of stress hormones. Our neuroprotection helps reduce stress and facilitates, supports, and encourages those positive pathways so that these children are not continually stressed to the point that their brain changes and it impacts their overall function.

Repeated stress can alter brain structure and neurobehavior. Repeated stress can also alter pathways impacting feeding in the NICU and after discharge. I've had many infants over the years who've gone home able to take a bottle or breastfeed because, until about four months, babies are reflexive suckers.  So, a lot of these babies come out of the NICU taking in enough nutrition that they gain weight and go home.  Remember, they've had such negativity associated with feeding that the pathways have been negative. The positive pathways of, "Oh, I love food. I love doing this, this is great," have not been reinforced. So, once they are home, you'll see a later refusal to feed, or when they are older, they will only eat certain foods on certain days at certain times, etc. 

We must consider neuroprotection because simultaneous actions are occurring in preterm infants. First, they're in a NICU. They are trying to become a feeder, but they're also developing sensory and motor pathways.  All of this happens simultaneously. Not to mention, they're trying to keep their body temperature up and deal with all that is occurring in their environment.

Importance of Feeding in the NICU

Feeding issues are the most frequent cause of delayed discharge from the NICU. Too many parents are told by hospital staff, "When your infant learns to eat, they can go home." Remember, infants don't learn to eat until about four months old; it's reflexive. Physiological status has to be such that it's supported. They have to be able to do it in a safe and efficient manner.  When parents are told, "Your infant has to learn to eat, and then they can go home," that makes a parent want to practice, and sometimes it's not ideal for the infant to have lots and lots of nipple time. It's very much based on the infant and their physiological status. But that is a huge issue in the NICU and is extremely stressful.

Infants born earlier than 28 weeks gestation, with extremely low birth weight and complex medical diagnoses are at greater risk for delayed full feeds. It takes a lot longer because they're doing so many things. They are born early and they have fragile blood vessels, underdeveloped lungs, underdeveloped GI system, etc. 

The degree of medical complexity and the number of diagnoses closely correlate with a longer time to reach oral feeds. This means that the more issues the infant has (e.g., congenital heart defect, respiratory distress syndrome, oxygen saturation issues, etc), the longer it takes for them to reach full feeding. 

Feeding: Comparison

There is a lot of research on volume-driven versus co-regulated/cue-based feeding. Volume-driven is volume/time-based. We get 30 minutes to feed and the infant has to take 60 cc, or two ounces, every three hours. There is more of a risk of oral aversion and negative physiological impacts. It's a poor model for parents because they are told, "Bobby has to take two ounces, whether he wants it or not, every three hours." It also puts the neurobehavior and the brain structure at risk because it will continue to support negative pathways.  If an infant is showing signs of, "Okay, I'm good. Thank you, back off now. I'm full. I can't do this anymore," and I continue to push because they have to have 60 cc, that creates pathways that say, "Bad, bad, bad," and not, "Good."

Rather, we want to see co-regulated/cue-based feeding where the infant actively participates in collaboration (Shaker 2017). Being fed becomes being supported to feed. The therapists and the parents are using strategies to help the infant feed safely, and they are respecting that infant's boundaries. Feeding begins when hunger is cued and ends with satiation.  

However, an infant born at 36 weeks is considered preterm, and in the NICU, that automatically means the physicians and dieticians determine how much the infant needs because they are preterm.  But that is not ideal. It is much better not to push the baby to eat or decide they need X amount of calories.

I have also heard often,  "We understand cue-based. It's great that we're looking for the infant to cue that they're hungry, fantastic." But then I will hear, "The baby is doing really well. They have taken 45 cc or 60 cc, but now they're beginning to slow down, so let's have them take in more." So, although feeding begins with hunger cues, it's not ending with satiation cues. 

Examples of Distress

Examples of distress include bradycardia, flaccid tone, sneezing, hyperextension, eye aversion, irritability, crying, staring, and grimacing. It looks a lot of different ways. It doesn't look calm, collected, and cool. We must recognize distress in this population.

Prematurity: Impact on Caregivers and Family

Maternal Experience

What's the impact of prematurity on caregivers and family? The maternal experience is that the birth moves from a natural process to a crisis process. It results in negative emotions, grief, and guilt. Early attachment is impacted by a high-tech environment. Sometimes, Mom and Dad can't come in to see the baby or hold the baby because a procedure is being done, the baby's oxygen stats aren't up, or whatever the case may be. The infant is less able to interact.

Parent Perceptions (Maternal-Specific)

Looking at parent perceptions that are maternal-specific, mothers, more so than fathers, have reported more stress in the NICU. In one study, a mom reported a greater increased change to her daily routine, and her role as a parent was more damaged (Clottey & Dillard, 2013; Lindberg & Ohrling, 2008). Additionally, she felt more guilt.

Additional Parent Perceptions

When parents and providers partnered in the NICU and the PICU, parents reported communication problems and lack of collaboration. They also described some system barriers and financial concerns. It is extremely stressful to have a child in the hospital or NICU, and then you are also worrying about getting back to work so you can pay the bills (Lutz, 2012).  

Fathers reported overall higher stress levels, while mothers reported more health-related problems, more depression, social isolation, and role restriction. Parents with preterm infants continue to report more stress than those with term, even after discharge. So, the stress is not over when the infant goes home (Howe et al., 2014).

Family Support

What can we do? We can provide family support and empathize with the family experience. That means, if you have a two-year-old child on your caseload who was born at 28-30 weeks, empathize with the fact that the mom and dad did not get to take the baby home to the nursery as they expected to. They may have had lots of time in the NICU where they didn't get to do the things that they wanted to with their baby, didn't get to make all the decisions that they wanted to about their baby, and maybe felt some guilt or disassociation.

Provide opportunities for families to share their feelings and needs. Help them with the identification of support systems. Advocate for them. A family may have an outstanding pediatrician, but they see many patients in one day. Sometimes, we are the voice that advocates for these families.

Encourage healthy coping strategies. I've had some wonderful parents who want to help their children so badly. They have taken books out of the library, they have searched online, they have taken courses. They have done everything possible to help their children with development or feeding, which is admirable. However, parents need a break too, and they need to let themselves be a parent and not the therapist all the time. We want to empower them with strategies, but we do not want to force on them this need to become therapists themselves. Therefore, encourage healthy coping strategies for these parents because they have had a rough time.

Questions and Answers

I don't work in a pediatric unit or hospital. In the example of the infant having a rectal biopsy, is it hospital-specific to not inform the parent or caregiver that a procedure will be done so they can be present if possible?

That's not what I was getting at with the example. The parents would consent to procedures, etc. But not all parents can be there during the procedure.  The NICU I was in was large and babies were coming in from four and five hours away.  It's possible that there are two or three other children at home and they can't be at the hospital all of the time. Staff does work very hard to try and console, and we have volunteers, but sometimes the surgeons have very tight schedules.  I'm not condoning that, but it is not always possible to spend as much time as you might if it was your own child.

For an infant who survived Shaken Baby Syndrome, are their learning profiles similar to the long-term educational needs of a pre-term child?

I can't really comment on how much the learning profile would be similar. I recall seeing an infant with Shaken Baby Syndrome, but that child was neurologically devastated, so his outlook was not very positive. His outlook was not as favorable as many of the infants I've seen with prematurity.

Why is there a connection between unintended pregnancy and prematurity?

A lot of times, if someone doesn't know that they're pregnant, then they aren't taking care of themselves in the same manner. For example, I've known moms over the years who didn't know they were pregnant, so they didn't do any prenatal vitamins, and they didn't take care of themselves in ways that they would normally take care of. 

Additionally,  I remember a really wonderful mom who had an infant with neonatal abstinence syndrome. She had two teenage children and thought she was going through menopause. She also ended up with a back injury and was on medication for it. Sometime later, she finds out she's pregnant and has been taking this pain medication. So, in that instance, the infant was born somewhat premature and did have neonatal abstinence syndrome. But again, she had no idea. She thought she was going through menopause.

Would a baby who is born full-term but exposed to drugs in utero likely have similar deficits?

That is a whole different population.  We've seen infants born prenatally exposed. Neonatal abstinence syndrome is associated with opioid exposure. So you can be exposed to other drugs in-utero that don't produce a neonatal abstinence syndrome. That being said, a lot of the problems that I've seen with infants with neonatal abstinence syndrome is that they have so much dysregulation. So, term or preterm, these infants struggle in a different way, but certainly, the preterm infant with neonatal abstinence syndrome will have many of the same problems down the road because they're in there doing the same things. They may have respiratory problems and things like that. 

However, a term infant with neonatal abstinence syndrome is going to have many issues that are related to exposure to opioids. They will have many GI issues, lots of dysregulation, and other problems, too. However, they may not have fragility of blood vessels or something like that. 

*See handout for references.