ABCs of Prematurity Awareness

In honor of my 3-year-old NICU graduate who loves to read, here are the “NICU ABCs” I shared for Prematurity Awareness Month:

A is for apnea of prematurity, a pause in breathing that last more than 15-20 seconds. This occurs commonly in babies born before 34 weeks gestation because their brain and respiratory systems are immature. It is treated by giving preemies caffeine. Peter was on caffeine for about a month in the NICU.

B is for blood transfusion. Premature infants often require blood transfusions to treat anemia of prematurity. Anemia of prematurity is multifactorial, caused by frequent blood draws for laboratory testing, reduced levels of erythropoietin in preterm infants, and rapid growth rates. Anemia results in poor weight gain, pallor, fatigue, and a distended belly. Peter only needed one blood transfusion at the beginning of his NICU stay. His blood transfusion was necessitated by significant blood loss at birth that put him into hypovolemic shock (ie, he was unable to maintain a normal blood pressure because there wasn’t enough blood circulating).

C is for Code White. At UMass Memorial, “Code White” is the mother/infant emergency medical code. Roughly translated, it means, “Holy sh**! We need an obstetrician and an anesthesiologist and a NICU team NOW because a baby is trying to die on us.” That’s how Peter made his entrance into the world. My water broke in front of a first-year medical resident, Peter came sliding out of my vagina feet-first, and Code White was called at 3:35 a.m. Things happen very quickly once Code White is called. My husband missed Peter’s delivery because he didn’t get scrubbed into the operating room fast enough. Sometimes I feel like I missed Peter’s delivery, too, because I kept my eyes closed through the whole ordeal, trying to block everything out. The placenta completely detached from my uterus before Peter was delivered, and Peter was in rough shape after delivery. He wasn’t breathing, he wasn’t pink, and he wasn’t responsive. He did have a slow heart beat, but he was in hypovolemic shock due to blood loss from the placental abruption. Peter was immediately intubated, and thankfully, his Apgar score improved to a 7 by 15 minutes after delivery. Code White saved my son’s life.

D is for dry skin. The skin of preterm infants is much more thin than that of full-term infants. This is because the stratum corneum is not yet fully developed. Particularly at the limits of viability (23-24 weeks gestational age), the skin appears glossy and transparent because the stratum corneum has not yet developed. Additionally, preterm infants have greater cutaneous perfusion and hydration of the epidermis than adults. The result is that preterm infants lose a lot of water through their skin, and it doesn’t take long for their skin to become dry and scaly. Preterm infants readily absorb topical medications and other agents applied to their thin skin, and they are also more susceptible to infection because this protective barrier is thin.

E is for electrocardiogram (EKG). Preemies often have bradycardia episodes (periods of slowed heart rate) due to either apnea or hypoxia or even gastroesophageal reflux. Because of their high risk for bradycardia, preemies are usually kept on cardiorespiratory monitoring – including a 3-lead EKG – for most of their NICU stay. Bradycardia was the final straw keeping Peter in the NICU at the end of his hospitalization. I was overjoyed when, after 71 days of being tethered to vital signs monitors, Peter passed the 5-day “brady watch”, and I finally was able to hold a wireless baby.

F is for fortifier.  Human milk fortifier, to be precise.  Though breast milk is an amazing superfood for all babies, it doesn’t quite meet the high protein and mineral needs of growing preterm infants.  Human milk fortifier is added to breast milk to help with weight gain, length and head circumference growth, bone mineralization, and neurologic outcome.

G is for gavage feeding!  Premature infants receive milk through nasogatric or orogastric feeding tubes until their suck reflex matures (around 34 weeks gestational age) or until they are extubated, whichever comes later.

Photo: Dinner time!   This is how Peter got breast milk during his first six weeks of life, before his suck reflex was mature: the nurses put a tube down his throat and into his stomach, a syringe attached to the other end was filled with milk, and we held up the tube for 5-10 minutes while gravity emptied the syringe into Peter's belly.  Sometimes we would dip Peter's pacifier in the milk so that he could have a taste while his belly was being filled.  The tube didn't bother Peter until his gag reflex became mature.  By then, though, he was ready to try nipple-feeding.

H is for hernia. Both inguinal hernias and umbilical hernias are more common in premature infants than full-term infants. Umbilical hernias usually resolve spontaneously, but inguinal hernias require corrective surgery.

Photo: Fact #23: Umbilical and inguinal hernias occur more often in premature infants.  Inguinal hernias require hernia repair surgery.  Umbilical hernias are usually self-resolving.  See Peter's umbilical hernia:

I is for intraventricular hemorrhage (IVH). Typically, doctors use cranial ultrasound when preterm infants turn 7 days old to screen for IVH because 97% of IVHs show up within the first week of life. Peter’s doctors were particularly worried that the disturbances in blood flow and blood pressure that Peter underwent during his traumatic delivery caused a brain bleed, so they ordered his first cranial ultrasound on his first day of life. Thankfully, Peter only had a small grade 1 IVH. Grade 1 IVH is not associated with worse neurological outcomes than the absence of IVH. Grade 2 carries a slightly increased risk of neurological impairment, but grades 3 and 4 are what we really worry about because they can cause hydrocephalus, seizures, short-term autonomic instability, cerebral palsy, mental retardation, blindness, and deafness.  That said, the newborn brain is incredibly maleable, and some babies with severe IVH do not have neurodevelopmental impairments.

J is for jaundice. One of the first things that Peter’s NICU nurse told me about Peter was that he was going to develop jaundice. Pretty much all preterm infants born before 35 weeks gestation develop neonatal jaundice because their livers are not mature enough to efficiently conjugate bilirubin. The major complication of hyperbilirubinemia is kernicterus (bilirubin-induced brain dysfunction). Happily, phototherapy is a very effective treatment option for neonatal jaundice. (When phototherapy fails to keep bilirubin levels in check, exchange transfusion may be needed.)

K is for Kangaroo Care. When babies are held bare chest-to-bare chest, C afferent nerves in the chest, shoulders, and forearms are stimulated in both the baby and the adult. Stimulation of this special group of nerves through pleasant human touch results in the release of oxytocin, which helps to normalize premature infants’ temperature, heart rate, and respiratory rate. Kangaroo care also improves premature infants’ weight gain and reduces the incidence of nosocomial and respiratory infections. From the parent’s perspective, kangaroo care increases milk production, reduces stress, and promotes attachment and bonding.

L is for lanugo. Fetuses and preterm infants typically have lanugo (fine, downy body hair) from roughly 23 to 35 weeks gestational age. You can see a little lanugo on Peter’s shoulder here. It gets replaced by vellus hair in early infancy.

Photo: L is for lanugo.  Fetuses and preterm infants typically have lanugo (fine, downy body hair) from roughly 23 to 35 weeks gestational age.  You can see a little lanugo on Peter's shoulder here.  It gets replaced by vellus hair in early infancy.

M is for meconium. I think that it’s fair to say that few people get as excited about bowel movements as parents of preemies. Bowel movements are a sign that your baby’s intestines are working and his liver is excreting bilirubin and other metabolic waste products. Very premature infants often get little or no milk during their first days of life, so it takes awhile to get the meconium cleaned out. Most babies will pass meconium for the first 2 or 3 days, followed by transitional stools and then milk stools on about day 6. Peter, on the other hand, took a couple glycerin suppositories and 16 days to clear out all his meconium.

N is for NPO (nothing by mouth) because we suspect your baby may have NEC (necrotizing enterocolitis). At the time, I didn’t know what necrotizing enterocolitis was, but I could see that the neonatologist was concerned when, at 4 days old, green bilious residuals were aspirated from Peter’s stomach, Peter had increased apnea and bradycardia requiring him to placed back on CPAP, and an x-ray showed that his intestines were inflamed. NEC, a common gastrointestinal disease in premature infants with 20-40% mortality rate, was on the differential diagnosis. Happily, Peter’s abdomen was not distended, and there were no other signs of NEC (bloody stools, portal vein gas, ascites). Peter’s feedings were held for 4 days, but if NEC had been formally diagnosed, he would have been treated with a course of antibiotics (vancomycin, gentamicin, and metronidazole) and stayed NPO for a much longer period. Breast milk-fed babies are much less likely to develop NEC… another reason why breast milk is “liquid gold” for preterm infants.

O is for oxygen. Pulmonary function is really the biggest concern for very preterm infants because babies with good lungs generally are less likely to have other complications of prematurity (NEC, patent ductus arteriosus, IVH, retinopathy of prematurity, ventilator-associated pneumonia, etc.). Preterm infants are at risk for pulmonary problems because aveolar sac maturation, capillary oxygen exchange, and lung surfactant production is not complete until a baby is full-term. Preterm birth disrupts the normal maturation process, leading to respiratory distress syndrome and bronchopulmonary dysplasia. Corticosteroids given to the mother before delivery promote lung maturation and reduce neonatal morbidity and mortality. Peter didn’t get a full course of steroids because he made his appearance 24 hours after my first dose of betamethasone, but thankfully, he still had great lungs for a 27-weeker.

P is for patent ductus arteriosus (PDA). The ductus arteriosus is a fetal blood vessel that shunts blood from the pulmonary artery directly to the descending aorta, bypassing the fetus’ non-functioning lungs. We tell women in the third trimester to not take NSAIDs because they can cause the ductus arteriosus to close prematurely. Preterm infants, on the other hand, often have difficulty getting the ductus arteriosus to close. Their PDA can be treated with an NSAID (IV indomethacin or ibuprofen). Peter had a medium-large PDA that was implicated in his respiratory and digestive regression at 4 days old. Happily, his PDA closed with 2 rounds of NeoProfen. Babies who don’t respond to NSAIDs or who are not candidates for NSAID therapy (because they are too old or at risk for GI bleeds) can have the PDA surgically tied shut, forcing blood to travel into the lungs where it’s needed.

Q is for questions. My list of naive questions for Peter’s nurses and neonatologists seemed to be never-ending. Why are his legs all brown? (They’re bruised. Remember how he was pulled out feet-first?) Why can’t the Intralipids be run as a continuous infusion over 24 hours like the HyperAl? (I’m still not sure about that one, but I think it has to do with liver toxicity.) Is Peter’s PDA related to the echogenic intracardiac focus we saw on the anatomy scan? (Not in any way.) Is it really safe to administer the Hepatitis B vaccine to a 3-pound baby? (Yes. But if he’s less than a month old, it may not be effective.) Is it normal for a baby’s head to be so long in the back? (It’s normal for preemies who end up with heads that are flattened on either side after laying in an incubator for months.) Is my son going to grow up with neurological deficits? (We can’t say for sure, but he has done very well for a 27-weeker.) Happily, the NICU staff make parent education, support, and involvement a high priority. After 73 days in the NICU, I felt like part of their extended family.

R is for retinopathy of prematurity (ROP). Stevie Wonder, born 6 weeks premature, lost his vision to ROP when his retina detached. ROP occurs in preterm infants who experience oxygen toxicity or relative hypoxia, resulting in disorganized growth of blood vessels. The conventional treatment of severe ROP is peripheral retinal ablation with a laser photocoagulation device. Intravitreal bevacizumab (Avastin) has become an alternate treatment modality in recent years. A 2011 clinical trial comparing Avastin to laser eye surgery found that Avastin was better for zone I (near the optic nerve) stage 3+ ROP. Peter’s stage 2 ROP didn’t require any intervention, just close monitoring.

S is for surfactant. Pulmonary surfactant reduces surface tension in the lungs and thereby increases lung compliance and prevents atelectasis (aveolar/lung collapse). Respiratory distress syndrome (RDS) is common among preterm infants because they do not produce sufficient pulmonary surfactant. Very preterm infants (including Peter) usually receive exogenous surfactant (beractant) via endotracheal route as soon as possible after delivery to help minimize RDS.

T is for total parenteral nutrition (TPN). Peter received TPN either exclusively or as a supplement to his enteral breast milk feedings for the first 18 days of his life. Because the gut of extremely premature infants is immature and because the risk for necrotizing enterocolitis is high, enteral feedings are started at tiny volumes (e.g., 1 mL every 3 hours) and slowly titrated up to full volume feedings as tolerated. Once at full volume, human milk fortifier is also added to increase the caloric and mineral content of feedings. But between birth and “full feeds” TPN provides needed fluid, electrolytes, calories, amino acids, vitamins, minerals, and fats into an infant’s vein.

U is for umbilical arterial catheter (UAC) and umbilical venous catheter (UVC). These are the first central lines that babies admitted to the NICU receive. Peter’s UAC was used to monitor his blood pressure and take blood samples during his first couple days of life. The UVC was used for 7 days to administer TPN and other IV medications. At a week old, the UVC was replaced with a peripherally inserted central catheter (PICC) which could be kept in for longer periods than peripheral IVs. The PICC line was removed at 18 days old when Peter no longer needed TPN. At that point, he was allowed to wear CLOTHES for the first time. Peter still wears a small scar on his wrist where his PICC line was inserted.

V is for ventilator. Mechanical ventilation is a life-saving form of respiratory support for preterm infants with respiratory distress syndrome, but it also carries a lot of risks. Some complications include pneumothorax (a collapsed lung), tracheomalacia (collapse of the tracheal walls), sinusitis, and ventilator-associated pneumonia. The goal is generally to wean infants from a ventilator to room air, but there are a lot of different respiratory support modalities for preemies who need to take baby steps – backwards and forwards – towards a tube-free lifestyle. BiPAP, CPAP, Vapotherm, nasal cannula, and oxygen hoods are among the more popular forms of respiratory support in the NICU.

W is for weight gain. You know you’re a NICU mom if you can tell anyone who might be interested how much your baby weighs today to the nearest 10 grams. Weight gain feels like a constant battle for very low birth weigh babies. Peter lost 15% of his birth weight during his first week of life, finally making it back up to birth weight at 16 days old. He hit 3 pounds at 3.5 weeks old, 4 pounds at 6 weeks old, and 5 pounds at 10 weeks old. That said, Peter really started to thrive once we brought him home; he gained 3 pounds in the first month home!

Not too many options for X, so we’ll say that X is for x-ray. Preemies often get multiple x-rays during their NICU stay. X-rays can verify proper placement of central lines, endotracheal tubes, and chest tubes, and they are also useful for diagnosing conditions such as necrotizing enterocolitis, pneumonia, pneumothorax, and osteopenia. I believe that Peter had 3 x-rays during his NICU stay… not bad for a 27-weeker!

Y is for yeast infection. Candida is a genus of yeasts and is the most common cause of fungal infections in the world. Thrush is an oral Candida infection, and for breast fed babies, it frequently leads to the triad of thrush, diaper rash, and mastitis. Peter developed a Candida diaper rash in the NICU… thankfully, it stopped there. These superficial fungal infections are fairly easily treated, but systemic fungal infections (such as the meningitis cases caused by tainted products from the New England Compounding Center last year) can be very serious, difficult to identify, and hard to treat.

Z is for Zzzzzz. Premature infants sleep more total hours than term infants. Unfortunately, the sleep of premature infants is less deep and more restless than that of term infants, and premature infants wake more frequently than term infants. After hospital discharge, premature infants may take several days or weeks to transition from the brighter, noisier NICU environment to the calm home environment. It was a particularly difficult transition for Peter; his longest stretches of sleep when he first came home were 2 hours. I had never intended to co-sleep, but I quickly found that co-sleeping was the only way that I could get an occasional 3-hour stretch of sleep out of him. I was able to transition him back to a crib after 2 months, but he continued to wake an average of 3 times every “night” (think midnight, 2 a.m., 5 a.m.) until he was 13 month old.

November 17 was World Prematurity Day. Approximately 1 in 10 babies is born prematurely in the United States and worldwide. Prematurity is the leading cause of death in newborns and infants. The lower the birthweight or gestational age, the higher the mortality rate. Infants born at less than 32 weeks’ gestation are 73 times more likely than term infants to die within their first year. Even infants born at 34 to 36 weeks’ gestation are three times more likely to die. Premature infants suffer short-term and long-term consequences such as hypothermia, respiratory distress, cardiovascular disturbances, and increased hospitalizations, as well as visual, auditory, and learning disabilities.  Pharmacy friends can read more here.

In the news this year:

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