The complete resource for NICU families from admission to discharge and beyond

Something has gone terribly wrong! You made it through your pregnancy, your due date is 2 weeks or less away, and you thought everything would be fine! If you had a scheduled c-section, your doctor assured you that your baby was “mature” even though you’re not quite at your due date. You may have even undergone an amniocentesis for “lung maturity” that came back as “mature.” But a bunch of nurses and other people you don’t know are taking your baby away from you, and you don’t really know why and nobody is telling you anything. WHAT IS HAPPENING ???

It’s an unfortunate fact that even term babies can be sick at birth and need specialized care from a neonatologist in a Neonatal Intensive Care Unit (NICU). The most common reason for this is respiratory distress after birth – difficulty breathing. If you notice your baby is breathing really fast, and/or his/her chest is sinking in when s/he breathes, this is abnormal and could be dangerous. Your baby may have some congenital abnormalities that were unexpected, and require specialized care. Or, things may have started out fine, but your baby can’t keep his/her temperature normal, can’t feed properly, or doesn’t move normally. Anything that prevents your baby from breathing, feeding, and staying warm in a regular crib may require admission to an NICU. A NICU admission for a term baby is particularly unexpected, and so can be that much more stressful. Furthermore, the range of problems that can be experienced by term babies is much broader than with preterm babies, may show up very suddenly, and can be life-threatening if not immediately recognized and treated by people who are trained to take care of babies.

Sometimes, a NICU admission is anticipated because of a prenatally-identified abnormality that will require specialized care. Hopefully, you have already met with your neonatologists (and any other specialists that may be involved), toured the NICU, and discussed a general plan of care. See “Diagnoses/Conditions” for a dedicated discussion of your baby’s abnormality.

Respiratory Distress after Scheduled C-Section Delivery

Babies born by scheduled c-section without a trial of labor are much more likely to have difficulties breathing after birth than babies born vaginally, or even by c-section after failed labor. Prior to birth, your baby’s lungs are filled with amniotic fluid, and his/her entire blood flow is rerouted to avoid the lungs, because they are not being used. However, at the moment the umbilical cord is cut, the lungs must inflate with air, and the blood flow must completely change to go first to the lungs to pick up oxygen, and then out to the body. Labor is the process that prepares your baby for these major changes, and sets mechanisms in motion for lung fluid to be immediately absorbed in preparation for that first breath of air. Without a trial of labor, your baby has absolutely no idea of what is about to happen until s/he is snatched out of that dark, quiet, warm place into a cold, bright, noisy operating room! Difficulty breathing after birth is not only common – it’s amazing that any baby is able to adapt so quickly.

The substance needed to help your lungs inflate is called surfactant, and the cells in your lung start to manufacture it at around 36 weeks’ gestation. But presence of surfactant is just one factor in the complex respiratory system. Boy babies – especially Caucasian boy babies – have the most trouble breathing after birth. If you had trouble with your blood sugars during pregnancy (e.g. gestational diabetes), and your baby is being delivered by c-section a little early because he’s big, it’s highly likely that he will have respiratory distress after birth that may require NICU admission. If you are delivering in a hospital without a NICU or a neonatologist in-house, this may require your baby to be transported to another facility, separated from you.

Most respiratory distress after birth resolves rather rapidly, with the assistance of nasal CPAP or some other type of positive pressure ventilation. Your baby may have a breathing tube placed in his/her windpipe, to deliver exogenous surfactant and/or to support his/her breathing for as long as is needed. Depending on the circumstances surrounding the birth, your neonatologist may be concerned for a neonatal pneumonia (see below), and may start your baby on antibiotics. Although the respiratory distress may disappear in 2 or 3 days, it may take longer for your baby to demonstrate adequate feeding ability. Your baby will be ready for discharge when s/he is breathing entirely independently, without any extra oxygen, feeding either from a bottle or at breast, and staying warm in an open crib, dressed normally. If it’s in the first week of life, s/he may still be losing weight, but that’s normal.

Neonatal Sepsis

Your baby may have looked sick at birth. You may have developed a fever during labor, your bag of water may have been ruptured for 18 hours or more, and/or you may be one of the 20-30% of women who are carriers of the GBS bacteria. Maybe you heard your obstetrician say s/he was concerned that you were developing chorioamnionitis and started you on antibiotics during labor. Any of these things causes suspicion that your baby may have gotten infected prior to, or during, the birth process – even if your baby looks perfectly fine! Neonatal sepsis – especially so-called Group B Strep sepsis – can be life-threatening if not treated rapidly and appropriately. Treatment involves antibiotic therapy, as well as providing whatever type of support your baby may need while the infection is resolving. Term babies with fulminant sepsis can get as sick as one can possibly get and still recover. Therapies can include various types of mechanical ventilation, invasive intravenous lines and monitors, medications to support blood pressure and heart function, and narcotic sedatives and pain medications. Nutrition may be delivered directly into a vein rather than into the stomach, due to the baby’s inability to digest and absorb milk. Babies with fulminant sepsis may develop persistent pulmonary hypertension of the newborn (see below), and require full heart-lung bypass (ECMO) to recover. In addition to a blood culture, a sample of spinal fluid will be obtained (via lumbar puncture) to be sure the infection has not spread into the brain and spinal cord. This type of infection, called meningitis, requires higher doses of antibiotics, for longer periods of time, to treat completely. Partially treated meningitis can result in permanent brain damage.

Persistent Pulmonary Hypertension of the Newborn (PPHN)

This condition, previously called Persistent Fetal Circulation or PFC, occurs when the fetal cardiovascular system does not make the necessary “switch” to an ex-utero circulation that includes the lungs as the respiratory organ. In the fetus, because the lungs are not utilized, the blood pressure is the same in the lungs as in the body. Therefore, oxygen-rich blood coming in from the placenta does not flow into the lung, but bypasses it and goes out to the body. With the very first breath, blood needs to flow into the lung to pick up oxygen, so the blood pressure in the lung drops precipitously to route blood into the lungs. Babies with PPHN do not experience this drop in lung blood pressure, and the blue blood returning to the heart does not go to the lung to pick up more oxygen as it should. As a result, your baby develops hypoxemia, or a deficiency of oxygen in the blood. Because oxygen is essential for the proper functioning of every single cell in the body, this deficiency can be life threatening. PPHN is difficult to treat, as the relative deficiency of oxygen in the blood causes the blood pressure in the lungs to go even higher, perpetuating the problem. Your neonatologist will treat your baby with PPHN with a variety of therapies, including mechanical ventilation, inhaled nitric oxide, medications to help the heart and blood vessels work better, and sedation/analgesics to be sure your baby is comfortable. Most babies respond to these medical treatments; for the few who do not, ECMO, otherwise known as heart-lung bypass, can keep the oxygen levels normal in your baby until his/her lung blood pressure relaxes on its own. Once it is gone, PPHN never returns.

Unexpected congenital abnormalities

With advances in prenatal care, many congenital abnormalities are discovered prior to birth, allowing for plans and preparations to be made. However, not every abnormality is detected, making the discovery that much more difficult to cope with. Some abnormalities are immediately apparent in the delivery room, whereas others become evident in the first few days after birth.

  • Chromosomal abnormalities – unless you had an amniocentesis during the 2nd trimester of your pregnancy, chromosomal abnormalities in your baby may have gone unidentified. In the delivery room, a probable syndrome may be identifiable by a characteristic appearance of your baby’s face, eyes, ears, or other body parts. Genetic testing can definitively diagnose hundreds of known abnormalities, and some prediction as to the long-term impact on your baby’s health can be made. Many times, your neonatologist will pursue genetic testing to demonstrate that your baby is normal, and relieve your anxiety. If you have any questions or concerns about your baby’s appearance – or if you have a family history of genetic abnormalities – be sure to ask your neonatologist!
  • GI tract abnormalities – abnormally formed intestinal tracts are common, and may not become obvious until your baby has difficulty feeding or stooling. Most term infants will pass their first stool – called meconium – within 24 hours after birth, and 95% will stool within 48 hours. If your baby has not passed any meconium by the time you’re ready to leave the hospital, be sure your doctor knows this! Sometimes, intestinal abnormalities show up because your baby vomits or spits up. Small spits, called “wet burps,” are very normal and no cause for concerns. If, however, your baby has projectile vomiting, or even tiny amounts of spit that are the color of spinach, that is abnormal and could be a medical emergency. Be sure to tell your doctor immediately!!! If you are told that “spitting is normal, and the color doesn’t matter” or if your baby’s abdomen becomes enlarged, tight, or discolored, ask for a 2nd opinion. While your baby is most likely fine, a missed abnormality could be life-threatening and s/he must be evaluated.
  • Cardiac abnormalities – Most abnormally formed hearts are first seen on ultrasound during pregnancy. Because your baby’s circulation is different before birth, most abnormalities have no impact on fetal well-being. However, when fetal circulation switches to infant circulation sometime after birth, some of these abnormalities can be fatal if not identified and treated immediately. The most dangerous types of anatomic abnormalities are not easily identified during routine newborn examination and care, and don’t become apparent until your baby is in extreme distress. If you notice a sudden change in your baby’s appearance or activity level, if s/he looks “blue” around the mouth and lips, or his/her legs and arms appear pale and mottled, tell your doctor immediately.

I had diabetes during my pregnancy

Babies born to mothers with diabetes during pregnancy can have multiple problems after birth, any one of which may require a NICU stay. All of the issues in the fetus/infant are the result of excess circulating fetal insulin, which is a growth factor and can affect every single developing organ/tissue in the fetus. When you have diabetes, your pancreas does not produce enough insulin to keep your blood sugar levels normal, resulting in high blood sugar, or hyperglycemia. Your doctor will have prescribed ways for you to keep your blood sugar levels normal – watching your diet, mild exercise, and maybe insulin or an oral medication such as Glyburide® or Metformin®. Keeping your blood sugar levels in the normal range is the best way to ensure the health and well-being of your baby! Because, you see, your baby doesn’t have diabetes. So, when your blood comes through the placenta into your baby, and it has an abnormally high amount of sugar in it, your baby’s pancreas reacts to normalize the sugar level by releasing larger amounts of insulin. That excess insulin normalizes your baby’s blood sugar level but, at the same time, because insulin is a growth factor, it affects every developing organ in your baby, possibly causing them to be abnormally formed. Additionally, after birth, your baby’s pancreas is still secreting high levels of insulin, but the supply of high-sugared blood from the placenta has been cut off. So, that excess insulin causes hypoglycemia – or LOW blood sugar – in your baby, which can cause seizures, brain damage, and death.

  • Delivered by c-section – many so-called “Infants of Diabetic Mothers” (also known as IDM babies) are bigger than normal (“large for gestational age” or LGA). This is a result of the excess circulating insulin which acts like a fertilizer on your growing baby. Because of the larger size, your obstetrician may recommend a c-section delivery, and possibly at 36 or 37 weeks, rather than at term. These so-called “late preterm” infants delivered by c-section without a trial of labor are much more likely to experience breathing problems immediately after birth, requiring a NICU stay. If you had diabetes, your baby was delivered before 38 weeks’ EGA, and s/he is in the NICU, go to “what to expect @ 35 – 37+ weeks for more information about late preterm babies.
  • Respiratory Distress – Surfactant is the substance produced by the lung that enables us to breathe easily. Term newborns can produce surfactant, which is essential to transitioning to life outside the womb. If your baby is intentionally delivered prematurely – even a couple of weeks – s/he may not yet be able to produce surfactant, which results in respiratory distress in the delivery room. Furthermore, excess insulin can inactivate surfactant so, even if your baby can make his/her own surfactant, it might not work properly due to excess circulating fetal insulin. This, too, can result in respiratory distress leading to a NICU stay.
  • Hypoglycemia – As described above, when your baby is exposed to high-sugared blood in utero, his/her pancreas responds by secreting higher levels of insulin than normal. This increased secretion rate continues for sometime after birth, resulting in blood sugar levels that are too LOW in your baby. This can cause seizures, brain damage, and death in your baby. Your baby’s blood sugar will be tested in the first 20 – 30 minutes after birth. If it’s low, your baby may be offered a bottle of formula to feed, even if you are planning to breastfeed. If your baby is having respiratory distress, does not feed well for other reasons, or has a sugar level that is already dangerously low, then s/he will be admitted to the NICU where an IV will be started to deliver sugar water intravenously until your baby’s blood sugar levels normalize on their own. This may take several days.
  • Anatomic abnormalities – Because high insulin levels can affect every single developing organ system, your baby may have an abnormally formed heart, GI tract, spine and/or skeleton, or brain. Some of these may be immediately obvious at birth, or may require further imaging/ultrasound to evaluate. Your doctors may decide to perform an echocardiogram (ultrasound of the heart), x-rays of your baby’s spine and ribs, ultrasound of his/her abdomen/kidneys and/or ultrasound of his/her brain. All of these studies are non-invasive and can identify abnormally formed organs or bones.
  • Feeding difficulties – many infants born to mothers with diabetes have difficulty feeding in the first few days after birth – even if born at term. This can be even harder to understand when your baby looks like such a big, healthy baby! But bigger is not necessarily better, as his/her size is an indication of excess circulating insulin. It may take your baby a week or more before s/he can eat entirely independently.

Regardless of why your term baby requires a NICU stay, discharge criteria are the same: your baby can go home when s/he can do all the things a baby in the normal newborn nursery can do. This includes: 1) breathing entirely independently and not requiring extra oxygen; 2) feeding entirely independently, either at breast or from a bottle, and never requiring tube feeds; and 3) maintaining normal body temperature in an open crib dressed in normal baby clothes. (Depending on how many days since your baby was born – known as chronologic age – s/he may not need to be gaining weight to be ready for discharge.) Occasionally, babies may be discharged home on supplemental oxygen or with a feeding tube in place, but this is the exception rather than the rule. If you are unclear why your baby is not ready to go home, ask your neonatologist!