The earlier in pregnancy babies are born, the less developed their organs will be. Many health conditions can result from the immaturity of important organs and systems including lung, heart, digestive tract, brain, immune system, and eyes. Medical support aims at helping a baby born preterm to achieve similar growth and development as in the womb at the same age. The medical team needs to recognise and monitor the special needs of a preterm baby to provide appropriate care and support until the baby reaches maturity of most important body functions. We summarized some medical conditions that may be seen in preterm or ill born babies. We try to explain what these conditions are, which babys have a higher risk of being affected, and how the condition might be diagnosed and managed. However, each baby is different and individual. The conditions listed may not be relevant to a baby’s situation. The medical team has a lot of experience in treating these conditions. We encourage parents to read only what they feel would be helpful to them and their child’s particular circumstances. As with all other information on our website, the information given here is not to be considered medical advice and is not intended to replace consultation with a qualified medical professional. To find out more about specific conditions, don’t hesitate to ask health experts.
1.Apnoea. Before birth the foetus has an irregular breathing rhythm with frequent pauses, called periodic breathing. After birth this has to become regular. The breathing control systems need some time to adapt and periodic breathing is frequently seen in the more immature babies. If the pause in breathing lasts for longer than 20 seconds, or if this period is accompanied by a slowing of the heart rate (the medical word for this is bradycardia) or by decreasing oxygen levels (measured as oxygen saturation), professionals call it apnoea. Breathing control becomes regular over the preterm period and most babies grow out of apnoea in the preterm period.
Who is affected and what are the risk factors?
Apnoea is fairly common health problem in preterm babies, as the central nervous system that controls breathing is not yet mature enough to allow regular breathing: Approximately 70% of preterm babies born before 34 weeks of gestation have apnoeas to some degree. The earlier a baby is born, the higher is the risk of developing apnoea.
How is it managed?
Babies in the NICU are constantly monitored. If an apnoea occurs, the healthcare team can immediately react to it. A small amount of physical stimulation (for example by gently touching the baby’s back or feet) can help the baby to begin regular breathing again. Sometimes, preterm babies may receive medication (usually caffeine medicine) to reduce apnoeic episodes. In some cases oxygen or respiratory support may be required.
2.Asphyxia is said to occur when the oxygen supply to the baby (or part of the baby’s body) is reduced to critical levels. It follows the effect of two events: where oxygen levels fall to very low levels (termed hypoxia) or where blood supply is interrupted (termed ischaemia). If asphyxia persists, then it can cause damage to critical organs. Asphyxia can occur before birth, during birth, or (less commonly) due to major complications after birth leading to sudden collapse.
Who is affected and what are the risk factors?
Asphyxia at birth occurs in 1-2 per thousand births at full term, leading to a brain condition called encephalopathy (or hypoxic-ischaemic encephalopathy or HIE). It may be slightly more common during preterm birth but preterm babies often tolerate low oxygen levels somewhat better than babies born at or near term, and signs that the baby has been affected may be less common. Asphyxia at birth is more common with maternal complications such as diabetes or hypertension.
How is it managed?
The major treatment strategy is to ensure that oxygen is delivered to all tissues in the body by increasing the level of oxygen the child breathes, or by ensuring that the blood pressure is maintained. Sometimes, extra drugs are needed to do this. For babies who are delivered after 35 weeks, sometimes cooling the baby’s body temperature to 33 degrees (normal is 37 degrees) is used to prevent ongoing brain injury. A transfer to a specialist centre may be needed for this to be carried out.
3.Bronchopulmonary dysplasia (BPD) or chronic lung disease (CLD) is the term given to persisting lung symptoms that develop in a proportion fo usually very preterm born babies (<32 weeks), who are treated with oxygen and mechanical ventilation. Early delivery may slow down lung development and injury to the fragile air sacs (alveoli) through which oxygen gets in to the body and waste gases (carbon dioxide) are removed. BPD causes symptoms, such as rapid breathing (tachypnoea), rapid heart rate (tachycardia), increased respiratory effort, and decreased oxygen levels, often treated by giving extra oxygen.
Who is affected and what are the risk factors?
BPD usually occurs in the most immature babies, in whom it is not uncommon, and much less frequently in more mature babies who have more severe lung problems. Within this group, major risk factors are the need for help with breathing and the presence of infection around the time of delivery.
How is it managed?
For most babies with BPD simple monitoring of oxygen levels and blood gas levels suffices, although not infrequently babies may need periods of extra support for short periods. Special attention is given to nutrition as we know this is important in recovery after BPD.
4.Hypoglycaemia. Sugar (glucose) is an essential source of energy in the body. Blood sugar levels fall after birth and if allowed to fall too low may may cause brain injury or other problems. Low blood sugar (called hypoglycaemia) is said to occur when blood glucose levels fall to lower than 30 mg/dL (Milligram per Deciliter) (1.65 mmol/L (milimoles per Liter)) in the first 24 hours after birth or less than 45 mg/dL (2.5 mmol/L) thereafter. Mild hypoglycaemia can be asymptomatic in the first one or two days.
Who is affected and what are the risk factors?
Hypoglycaemia is one of the most common symptoms in newborn babies. Babies who are born preterm, small for gestational age, or following diabetes in the mother are at higher risk of developing this condition.
How is it managed?
If hypoglycaemia persists despite oral feeding or is associated with severe symptoms, the medical team can give extra glucose orally or intravenously by giving a fluid containing glucose (usually, 5% or 10%) to stabilise the blood glucose level. The administration of glucose depends on the health situation of the baby.
5. Infection. When organisms, such as bacteria, viruses, or fungi invade the body it is called infection. If the immunity of a baby is weakened, even an organism that occurs normally on the body can become infectious. An infection can affect some or all parts of the body, and can have varying degrees of severity. They can occur in lungs (pneumonia), blood (septicaemia), urinary tract, or in the fluid surrounding the spinal cord and the brain (meningitis). Neonatal sepsis occurs when the body responds to an infection, usually septicaemia or blood stream infection. The symptoms are caused by chemicals or toxins from the infecting organism. This causes rapid generalised illness, shown as high body temperature, changes in blood pressure, or breathing difficulties.
Who is affected and what are the risk factors?
Preterm born babies are at higher risk for infections compared to term born babies. Infection can also affect the mother and be present at or soon after delivery. Generally the sicker the baby, the higher the risk of sepsis, and sepsis is particularly common when there are a lot of medical procedures (such as intravenous feeding lines).
How is it managed?
If an infection is suspected in a preterm born baby, antibiotics which cover the most likely possible causes may already be given before the diagnosis of infection. In general, infections are treated with antibiotics, antiviral therapy, or antifungal therapy, depending on the infection-causing organism. Therapy will last for a couple of days or even weeks. Due to the infectious disease the baby may also need additional support , such as intravenous fluids, tube feeding, or breathing support.
6.Intraventricular haemorrhage (IVH)?
Intraventricular haemorrhage (IVH) is bleeding into the deep spaces inside the brain called ventricles, where the cerebro-spinal fluid (CSF) is produced. The bleeding comes from a special tissue in the ventricles (called the germinal matrix), which normally disappears at around 34 weeks of gestation, so IVH is very rare after then. The blood vessels in the germinal matrix are thin and vulnerable to instabilities in blood flow, which can cause them to rupture. This causes bleeding which may stay in the tissue or rupture out into the ventricular spaces, where it clots and can be seen using ultrasound. These clots can sometimes block the drainage of CSF (which flows through pathways from one ventricle to the next, then out across the outside of the brain and down the spinal cord), leading to a build up of the fluid under pressure. On other occasions, the clot can disturb the blood flow from the brain, leading to bleeding into the tissues around the ventricle. These two complications are now relatively rare and most very preterm babies do not develop IVH.Professionals group IVH into four grades of severity:
| Grade I | The bleeding is restricted to the germinal matrix and blood does not enter the ventricles. |
| Grade II | Some blood clot is present in the ventricles, but not enough to enlarge them. |
| Grade III | The ventricles are enlarged or distended by the blood and clot inside them. |
| Grade IV | The IVH has affected drainage of blood from the brain tissue around the ventricle leading to tissue damage and bleeding outside the ventricle. |
Once damage has occurred to brain tissue, it cannot be reversed. However, a physical injury to the brain tissue does not necessarily mean later problems with brain function. The injury that is detected on ultrasound scan may lead to problems with motor function, vision, and later learning. The position and the severity of the bleeding determines the long-term effects.
Who is affected and what are the risk factors?
IVH tends to occur in the most immature and smallest babies; it is also more common in babies who need help with their breathing in the first few days or have unstable blood pressure. IVH usually starts within the first two days following birth, but the effects may develop over the following days and weeks. What is the cause? Because of the very fragile blood vessels in the germainal matrix, IVH can be caused by changes of blood pressure or blood flow that occur during the birth process or as a result of many other conditions, such as breathing or blood pressure difficulties.
How is it managed?
In general, the bleeding stops fairly quickly and the clots resolve as the body responds to them. Therefore, immediate treatment is not needed. The healthcare team keeps the baby stable and treats any symptoms. If the flow of cerebrospinal fluid is interrupted due to the bleeding, and pressure increases within the ventricles, it may cause a condition called hydrocephalus. This important condition can result in rapid head growth as the bones of the skull are not yet fused, as in older children. Several treatments are available including surgery for the placement of a “shunt”, which is a small tube that drains the fluid from the brain to another part of the body, usually the abdomen, and relieves the pressure.
7. Jaundice is a yellow colouration of the skin caused by high levels of bilirubin; it is also sometimes called neonatal hyperbilirubinemia or neonatal icterus.
Who is affected and what are the risk factors?
Many babies will have jaundice for at least a few days or weeks after birth. About 80% of preterm babies have jaundice during the first few days of life.
How is it managed?
Most babies who become jaundiced need no treatment. Where the bilirubin levels become high, the most common treatment for jaundice is blue light therapy. It helps to convert bilirubin into a form that is excreted in the urine. During the therapy, babies only wear a nappy to maximise the surface of the skin exposed to the light. Soft shields or pads are placed on the baby’s eyes to protect them from damage. The baby’s blood is usually tested at specific time points to check if the level of the bilirubin is decreasing. In rare cases of severe jaundice, it may be necessary to perform a blood exchange transfusion. In this procedure, the baby’s blood is removed and immediately replaced with compatible donor blood. However, exchange transfusions are performed very infrequently compared to the past because phototherapy is generally very effective and the important causes are picked up early and treated.
8. Necrotizing Enterocolitis (NEC) is a serious illness characterised by inflammation and damage to the tissues of the intestine. In severe cases parts of the intestinal tissue may die.
Who is affected and what are the risk factors?
NEC is mainly a condition affecting preterm babies, usually after the second week following birth. The earlier the baby is born, the higher the risk of developing NEC. About 5 in 100 very preterm born babies develop this condition. Where babies are very ill or fed formula rather than human milk, the risk is highest. Depsite the potentially severe illness, many babies with NEC will develop without serious complications later in life. However, although it is uncommon, NEC is one of the important causes of late death in preterm born infants.
How is it managed?
When the healthcare team suspects NEC the first steps are to stop oral feeds, to start intravenous fluids (and nutrition) and to treat with antibiotics. The team will organise X-rays and blood tests. Often, this treatment is necessary for 7-10 days if the diagnosis is confirmed. For most babies with NEC this is all that is necessary. Other babies are sicker and need support for their breathing and intensive care for several days. Some babies may become profoundly ill with NEC and one of two surgical treatments may be used. The first is to insert a tube (called a ‘drain’) into the space outside the intestine to drain any fluid and relieve pressure on the bowel; this allows faster healing. The other option includes surgical removal of the affected part of the intestine, often followed at a later date by reattachment of the healthy bowel sections. NEC can be a very serious condition and the healthcare team often start medical treatment first before the diagnosis is confirmed, only to confirm later that it was not actually NEC.
9. Patent ductus arteriosus (PDA). In foetal life, a special blood vessel connects the circulation from the lungs to the arteries, supplying the rest of the body. This is called the arterial duct or ductus arteriosus. After birth, normally this vessel spontaneously closes and separates the two circulations. In very preterm babies the duct may not close immediately and for some it persists – for which the medical term used is patent ductus arteriosus (or PDA). If the PDA is only partially open, there may not be any symptoms or consequences for the baby. However, if the opening is larger, blood flow to the lungs can increase and the heart must pump more than usual to compensate this condition. This can occasionally lead to potential health problems such as respiratory complications, heart failure, or a reduced blood supply to the kidneys, the intestines, and the brain. If left without treatment many PDAs eventually close but the healthcare team will weigh up the benefits and disadvantages of any health issues that may be made worse by the presence of a PDA.
Who is affected and what are the risk factors?
The earlier a preterm baby is born, the more likely it is to be affected by health issues resulting from PDA. For example, approximately four out of ten babies born before 34 weeks of gestation are estimated to develop a PDA.
How is it managed?
Sometimes PDA resolves without causing any serious problems, termed spontaneous closure. Often careful attention to fluid balance is all that is required. Several drugs may be used to try to encourage a PDA to close, usually indometacin or ibuprofen, In some situations, surgery may be needed to close the PDA.
10. Pneumothorax is the accumulation of air in the cavity between the lungs and the chest wall (termed the pleural space), which can lead to a lung collapse.
Who is affected and what are the risk factors?
Babies with other lung diseases such as respiratory distress syndrome (RDS) or lung infection (pneumonia), babies on mechanical ventilators, preterm babies whose lung tissues are immature and vulnerable, and babies with meconium aspiration (when a newborn inhales/ aspirates a mixture of meconium and amniotic fluid) are most at risk to develop a pneumothorax. Pneumothorax may occur in about five to seven percent of babies with birth weight of less than 1,500 g.
How is it managed?
The size of the rupture mainly determines the treatment strategy for a pneumothorax. Sometimes, it is possible to remove the air with a needle and the rupture may close on its own. More often, a special tube called a ‘chest drain’ is inserted between the ribs to allow the continuous removal of the air. When the pneumothorax has resolved the drain can be removed safely. Additionally, it can be necessary to give supplemental oxygen to the baby and gently ventilate. Sometimes, high frequency oscillatory ventilation (HFOV) is used and antibiotics may be administered to reduce the risk of a lung infection.
11. Pulmonary hypertension. The blood pressure in the arteries that supply the lungs and the rest of the body are at similar pressure in foetal life. After birth, as the ductus arteriosus closes, after a short while the pressure in the lung circuit falls and for the rest of life this pulmonary circuit works at a lower pressure compared to the rest of the circulation (systemic circulation). The pulmonary artery transfers blood from the right side of the heart to the lungs. In some situations the pulmonary pressure remains or becomes high, when it is termed pulmonary hypertension. This situation can lead to several health problems, depending on whether it occurs suddenly (acute) or persists over a much longer period (chronic).
Who is affected and what are the risk factors?
The disease is very rare in babies. About 1-2 of 1000 newborn babies may be affected, and it arises mainly during periods of intensive care. It sometimes accompanies asphyxia or bronachopulmonary dysplasia.
How is it managed?
Pulmonary hypertension may resolve with better ventilation, e.g. using high frequency oscillatory ventilation (HFOV). It also sometimes resolves with the use of inhaled nitric oxide gas. Very rarely in term babies, usually after aspiraton of meconium, it is reistant to ordinary treatment and babies may be referred for a complex treatment termed ECMO. The healthcare tea would discuss this in more detail if it is required and it is not used for small preterm babies.
12.Respiratory distress syndrome (RDS). Babies born without enough surfactant (a substance which helps the air sacs in the lung remain open), develop a condition called respiratory distress syndrome (RDS), also known as hyaline membrane disease.
Who is affected and what are the risk factors?
RDS occurs almost exclusively in preterm born infants due to the immaturity of their lungs and an inability to make sufficient surfactant. Babies born at the lowest gestations are at greatest risk: RDS affects approximately half of infants born at 26-28 weeks of gestation and a third of babies born at 30-31 weeks of gestation. Given antenatal steroid medication to mothers in the days before delivery reduces the risk and severity of RDS and is an important preventive treatment.
How is it managed?
If preterm birth is not completely unexpected, the mother may be given steroids which cross the placenta and help the baby to produce surfactant in the lung. The healthcare teams now prefer to prevent RDS if they can and so they often help babies breathing, for example with CPAP, before they develop symptoms. If it looks likely that the baby is developing RDS, the team can give artificial or natural surfactant, also called surfactant replacement therapy. There are several types of surfactant replacement therapy available. Some experts prefer to give surfactant replacement treatment into the lungs immediately after birth, while others give it when needed. The dose may need to be repeated. Alongside surfactant, babies usually need extra help to stabilise breathing, e.g. by giving extra oxygen or some form of breathing support, such as CPAP or ventilation. Most affected preterm babies recover from RDS without severe complications over the course of the first week.
13. Retinopathy of Prematurity (ROP) is a condition found in the eyes of ex-preterm babies. It is characterised by changes in the developing blood vessels of the retina (the light-sensitive layer in the back of the eye that sends visual signals to the brain). Although mostly it resolves without problems, if not identified and treated progressive disease can lead to scarring and retinal detachment (separation of the retina from the inside of the eye), causing poor vision or even blindness.
Who is affected and what are the risk factors?
Many different factors contribute to the development of ROP. Babies born before 31 weeks or less than 1,250g birthweight are at highest risk. The main risk factor is the use of oxygen therapy. The healthcare teams monitor oxygen levels in the baby very closely and try to find a balance between enough oxygen to prevent other serious diseases and too much, which encourages ROP. The occurrence of the disease varies across countries, regions and facilities and is determined by the quality of neonatal care and the resources of the facility. For example, among babies born in Western countries after 30-32 weeks of gestation, two to nine percent of the babies may develop some grade of ROP. When born at 26 weeks of gestation, the number increases to 50 percent. Those babies born below 26 weeks are at highest risk and the progression of ROP may be particularly rapid in this group.
How is it managed?
Although most babies do not need treatment, it is very difficult to predict in which babies ROP will disappear and which will develop more severe disease. This is why it is very important that an ophthalmologist continues with the screening in regular time intervals until the vessels cover the retina or the condition is considered stable. Sometimes, examinations have to continue until a few months after discharge. If the progression of ROP reaches key stages (threshold) it is very likely that vision is at risk, treatment is warranted. One of three treatments are available:
- Laser therapy works by destroying the peripheral areas of the retina causing abnormal vessels to disappear. Unfortunately, the treatment also affects later side vision. Treatment is usually given to both eyes and the eyes examined again five to seven days after treatment.
- Cryotherapy(applying a freezing probe to the outside of the eye to stop vessel re-growth) was the first treatment for ROP but is more difficult to use in very small babies and is used less frequently.
- More recently, some professionals are using an injection of an antibody to the chemicals that make the blood vessels regrow to treat ROP. This is used widely in adults with similar conditions. In babies, this is at the moment controversial but trials are under way to show how safe and effective it is.
Respiratory Syncytial Virus or RSV is a respiratory virus that infects the lungs and breathing passages. It is widely spread and especially common during the cold autumn, winter and spring months. Everyone is at risk of contracting RSV which affects almost every child and most will have been infected with the virus by the age of two. The majority of healthy people will experience flu-like symptoms while people with a weak immune system, for example the elderly and very young children, have a high risk of severe infection from RSV. People ill with chronic lung diseases, preterm infants, children with compromised immune systems, children with heart disease or children with Down Syndrome have also much higher rates of severe RSV infections. The same goes for those with neuromuscular diseases. Chronic disease per se is an important risk factor for RSV hospitalisation and makes a severe infection more likely.
What makes RSV dangerous? RSV is the primary cause of bronchiolitis which is an inflammation of the bronchial tubes (small airways in the lungs) and lungs. Bronchiolitis (not to be confused with bronchitis) is the most common infection of the lower airways in infants. The majority of bronchiolitis hospital admissions have been caused by RSV. RSV is also a common cause of pneumonia, which is a lower respiratory tract infection. It causes the air sacs of the lungs (the alveoli) and the smaller bronchial tubes to become inflamed and fill with fluid. An affected child might be unable to breath and will not get enough air. Unfortunately there is no treatment for an acute RSV infection available that can combat the cause of the disease. Only the symptoms can be treated.
What factors increase the risk of RSV? Children are at higher risk if they attend childcare centres or if their older siblings attend school, hence by being more exposed to RSV through contact. A family history of asthma also increases the risk of a more severe infection. The same goes for being exposed to tobacco smoke and other air pollution. Multiple birth siblings are also at higher risk as they are often born preterm and with a low birth weight. Moreover, they tend to (re)infect each other and are therefore more at risk to catch the virus. Outbreaks of RSV infection occur on a yearly basis, usually during the colder months of a year. Epidemics of RSV typically last approximately five months (from October to April in the northern parts of the globe and from July to September in the southern parts of the globe). However, in recent years RSV-season has been started in September already in Western and Central Europe. Often, the season finds its peak in January and February, less often in November and December.
Why are preterm infants more likely to get infected by RSV? Whilst full-term infants receive antibodies through their mother during the pregnancy, preterm infants did not get enough maternal antibodies over the placenta. Therefore, preterm infants are more likely to contract the RSV in the first few weeks of their life and onwards. Furthermore, preterm infants are often artificially respirated which might damage their lung tissue leading to the chronic lung disease BPD (bronchopulmonary dysplasia). These children are therefore more likely to contracting RSV as well as to go through a more severe acute infection because their bodies already limit their oxygen supply.
What are the symptoms of RSV? In the beginning, the initial symptoms of bronchiolitis often resemble the common cold.
Symptoms can be:
- a runny or blocked nose
- an increased body temperature
- a decrease in appetite
- a dry, “croupy” cough (often described as a “seal bark” cough)
- breathing difficulties
Further symptoms of RSV might include:
- persistent coughing and wheezing
- high fever
- sudden gasping for breath
Pneumonia caused by RSV has flu-like symptoms but can also include:
- coughing with mucus (possibly green, rusty or blood stained)
- shortness of breath
- chest pain
Should a newborn and especially a child at risk or with chronic disease show any of these symptoms, it is important to contact a healthcare professional immediately.
How is RSV transmitted? The virus is spread by infected people sneezing or coughing whilst releasing droplets containing the virus into the air, which are then breathed in or come in contact with the mouth, nose or eye(s) of someone else. Infection can even occur when one touches their mouth, nose, or eyes after touching a contaminated object or surface. The RSV virus spreads rapidly and can live for half an hour or more on hands, up to five hours on objects and worktop surfaces and for several hours on used tissues. The incubation period of RSV is between 2 – 8 days, on average it is 5 days. Some people infected with RSV show the first symptoms one day after having contracted the virus. Generally most people with a strong immune system are contagiousness for 3 – 8 days. However, preterm infants, infants and patients with immune deficiencies can be infectious for several weeks, rarely even for months according to the Robert Koch Institut.
How can the RSV risk be lowered? There is no RSV vaccine but preventive therapy has proved an important strategy to manage the virus. Parents of preterm infants and children at risk should consult with a health professional for more information. For example, children at particular risk can be supported in their defense against RSV using a special protective approach known as passive immunisation. To reduce the risk of infection with RSV, the following preventive steps should also be adapted:
- Covering of the nose and mouth with a tissue when coughing or sneezing
- Disposal of used tissues in the bin after use
- Washing of hands often and use soap and warm water (or an alcohol-based cleaner if soap and water is not available; anti-bacterial cleaners do not kill viruses)
- Touching of preterm infants and newborns only after hands have been washed
- Avoiding of touching of eyes, nose and mouth as germs can spread in this way
- Limiting physical contact with anyone who has a cold, fever or runny nose
- Disinfecting toys, play areas and surfaces (such as table tops) as germs can live for over 24 hours on household items
- No smoking nearby the baby and changing of clothes which were exposed to smoke (even second-hand smoke) before picking up the child
- Trying to avoid places where there are lots of people (e.g. public transport, big shopping malls and waiting rooms)
What are the short- and long-term effects of a RSV infection? In the short term a RSV infection might lead to either a cold or flu. The more severe cases will result in sometimes life-threatening bronchiolitis, pneumonia, BPD (bronchopulmonary dysplasia) or even death (1 in 100) due to limited lung function. Some children who have suffered a severe RSV infection may develop childhood asthma or show symptoms very similar to those of asthma. As a result, they may suffer from the consequences of an RSV infection for an extended period of time. A child who once contracted RSV does not develop immunity from future RSV infections. It is possible to experience repeated episodes of RSV infection.
What else can be done to improve health of children at risk in regards to RSV? Always monitor your child closely for infections because an early identified infection is easier to manage.
This information is based on materials from www.efcni.org. Special thanks to EFCNI for their support and advice