Babies born prematurely in Australia equal over 17,000 each year. It is a situation that no baby, mother or family chooses and strikes at random across all countries and ethnic groups.
Any parent who has had a premature child will understand the emotional roller coaster it brings. Premmie babies will often require intensive care treatment, surgery or round the clock monitoring.
A few years ago, babies born weighing less than 1 kilogram were classed as critical with many dying; however thanks to research and medical advances, doctors now regularly save babies weighing less than a loaf of bread.
Seven per cent of births in Australia are premature. A premature baby is classed as being born before 37 weeks of development. Babies that do survive the birth often face complications as their organs are too small or underdeveloped to function independently outside the womb.
As the lungs are the last organ to develop, lung-related disorders such as respiratory disease are the most common problem in premature babies. Cerebral palsy, blindness and brain damage resulting from a lack of oxygen reaching the baby’s brain are also common disorders.
Advancing technology has enabled doctors to save tiny babies who would have died in the past. However, it is equally important to conduct research into reducing the complications of premature birth.
As mentioned, cerebral palsy (brain damage) and blindness are two side effects associated with being born very premature. Too little oxygen can damage tiny brains and cause permanent disability. Too much oxygen in the early stages of eye development can cause blindness in premature babies. Continued research is required to ensure new technology is utilised to keep babies alive and stop adverse side effects from impacting on these babies later in life. A premature baby’s survival depends on its weight and how early it was born.
Whilst many premature births occur quickly, for some there is a bit of time to get used to the idea. Multiple pregnancies and assisted fertility pregnancies have a higher risk of preterm birth, and some conditions that occur during a pregnancy may also lead a doctor to warn of a possible premature birth, giving you a little time to find out some information about what may happen to you and your baby. Over 45,000 babies are admitted to neonatal and special care units and over 20,000 of these babies or 1 in every 20 births are born preterm. Some of the more common causes of premature birth are:
Preterm Labour (PTL)
Preterm Labour is labour that occurs before 37 weeks gestation and can result in progressive dilatation of the cervix. Preterm Labour can be difficult for the mother to recognise, but symptoms such as contractions, often felt as menstrual like cramps (especially of concern if they don’t go away after you lie down), pressure in the pelvis and/or low dull backache need to be investigated. Always contact your doctor or healthcare provider if you are concerned about what you are feeling. Bed rest can help, as can some drugs. Usually the aim is to prolong the pregnancy until the baby is closer to term, but this is not always possible as the baby may become distressed and need to be delivered, or the contractions may not respond to treatment and the baby will be born.
Preterm Premature Rupture of Membranes
Premature Rupture of the Membranes (or PROM) is when the “waters” break prior to the onset of labour. When PROM occurs before term is reached (I.e. Before 37 weeks), it is called PPROM or Preterm Premature Rupture of the Membranes.
PROM can occur at almost any time. If it occurs very early in a pregnancy, it can lead to the death of the baby as the fluid within the membranes is necessary for the development and survival of the baby. However, a small leak in the membranes may reseal, and as more fluid is constantly made, the fluid levels may increase again.
PROM can be caused by an infection, and if this is the case, the baby will often be delivered so that treatment can be started immediately. If no infection seems to be present, and the baby is not in distress, bed rest and monitoring will often commence until the baby is closer to term, or until an infection is detected. Pelvic exams are often not undertaken, to try to decrease the risk of infection.
Placental Abruption occurs when the placenta separates from the wall of the uterus before the baby has been born. The separation may be only partial, or the placenta may completely come away. Some partial abruptions may be treated with strict bed rest, and careful monitoring, but more serious abruptions require the baby to be delivered as soon as possible, often by caesarean section. The causes of placental abruption are often unknown, although high blood pressure, maternal diabetes or abdominal trauma (such as in a car accident) may contribute.
HELLP stands for Hemolysis, Elevated Liver enzymes, Low Platelets. Hemolysis is a normally occurring process at the end of the life span of a red blood cell. In HELLP Syndrome however, this process occurs very rapidly thereby reducing the number of red blood cells in circulation and causing anaemia, and may lead to shivering, jaundice, abdominal pain and an enlarged spleen. Elevated Liver enzymes usually lead to jaundice and pain in the upper right quadrant of the abdomen, liver function is impaired by HELLP. Platelets are used by the body to stop bleeding; a low platelet count can lead to bleeding problems. The platelet count may be one of the most reliable indicators of HELLP Syndrome.
HELLP is generally considered to be a variant of pre-eclampsia, although sometimes symptoms of pre-eclampsia are very mild.
Being pregnant with more than one baby increases the risk of premature birth. Approximately half of twins, and nearly all higher order multiples are born preterm. Many of the other possible causes of premature birth are just as likely, if not more likely, in a multiple pregnancy. Twin to Twin Transfusion Syndrome (TTTS) can only occur in multiple pregnancies. Sometimes bed rest is suggested to help reduce the chances of premature birth, although this is not always needed or necessary.
Twin to Twin Transfusion Syndrome
Twin to Twin Transfusion Syndrome, often referred to as TTTS, only occurs with identical twins (whether in a twin pregnancy, or as part of a higher order multiple pregnancy). It is essentially an abnormality of the placenta where blood passes from one twin to the other through blood vessels in the shared placenta. The problem is that the blood is effectively transfused from one twin to the other, leaving the donor twin anaemic and often very small, while the larger recipient twin has too much blood circulating putting excessive strain on the heart.
The recipient twin often has extra amniotic fluid surrounding it, the donor twin very little. One of the early signs of TTTS in the middle trimester can be a sudden increase in size of the mother due to the large amounts of amniotic fluid surrounding one twin. Ultrasounds can be important in leading to a diagnosis, the key factors being significant differences in size of the babies, size of their bladders, and the amount of fluid surrounding each baby.
TTTS can occur at any time during the pregnancy. At it’s most severe, it occurs before 20 weeks, usually resulting in a high mortality rate for one or both twins. TTTS can occur as late as during delivery of the babies, or even between the birth of the first and second baby. Where TTTS has been present for some time, it is often the larger twin who struggles more after the birth, having been working so hard pumping the extra blood.
Depending on when the diagnosis of TTTS occurs, and the extent to which it is affecting the babies, the treatment varies. It is possible to stop the transfusion of blood via laser treatment to seal off the blood vessels, however this treatment is relatively new in Australia (performed for the first time in Brisbane in early 2002?). Other treatments treat the symptoms rather than the cause, such as reducing the excess amniotic fluid from the recipient twin.
Placenta Previa occurs when the placenta implants low in the uterus and covers, either partially or fully the os (or opening to the cervix). Partial previas early in pregnancy often “move” away from the os as the pregnancy progresses and the uterus expands. Placenta previa can lead to second and third trimester bleeding. If the bleeding is severe, delivery of the baby is often necessary. In almost all cases, a caesarean section is required because the placenta is covering the opening to the cervix (occasionally the placenta is low lying and on the edge of the os, in which case a vaginal delivery may be possible). There is no treatment for placenta previa as such, although bed rest is often prescribed, especially if there have been any bleeding episodes. The biggest risk is a haemorrhage, and for the baby a premature birth, the baby may also be on the smaller side if the placenta isn’t functioning well.
Around five to ten per cent of pre-term deliveries in Australia are due to pre-eclampsia or its associated complications. Pre eclampsia is a serious disorder of pregnancy.
Pre-Eclampsia (sometimes known as PIH or Pregnancy Induced Hypertension, or as toxaemia) is a form of high blood pressure during pregnancy. High blood pressure can lead to reduced blood flow to various organs within the mother, including to the placenta. Placental abruption may occur (where the placenta separates from the uterus), and other problems such as poor growth of the baby may be present.
Pre-Eclampsia is characterised by three conditions, high blood pressure (higher than 140/90, or a big increase in the mother’s usual blood pressure), protein in the urine and oedema. Other symptoms to watch for include visual disturbances such as flashing lights or blurred vision, dizziness, headache, sudden weight gain, unusual nausea or vomiting, pain in the upper right area of the abdomen, just below the ribs and urinating small amounts.
Sometimes medication is needed to control blood pressure and the woman may benefit from resting. If left untreated, pre-eclampsia can lead to convulsions, kidney failure, liver failure, clotting problems or death. Some symptoms of pre-eclampsia, such as fluid retention, are also typical in normal pregnancies. This means that some women may dismiss the early warning signs.
The only cure for pre-eclampsia is delivery of the baby, however this may not be immediately necessary in all cases. Treatment depends on how severe the condition is. Bed rest and/or hospitalisation may be necessary for milder cases; regular monitoring of both the baby and mother will take place to ensure that both are remaining as healthy as possible. Medicines to lower blood pressure or Magnesium Sulphate (a drug used to prevent seizures) may be given. If pre-eclampsia is severe, causing distress to the baby or posing a significant health risk to the mother, the baby will be delivered, often by emergency caesarean section.
The onset of pre-eclampsia can be very sudden, with the mother going from feeling “quite healthy” to being very sick in a matter of hours.
In the NICU/SCN
Having a baby in the NICU (Neonatal Intensive Care Unit) or SCN (Special Care Nursery) can be a scary time. Often your baby has arrived unexpectedly and you are thrown into an unknown world.
This is a list of some things you might like to think about and do while your baby or babies are in the NICU.
- Take lots.
- Remember photos that include all the equipment that surrounds your baby – they may be interested in it when they are older, it can be easy to just take photos of your baby’s beautiful face when the NG tube is out for example, but get a couple with it in too.
- Try to take photos that have something in them, such as a doll or teddy bear, for a size comparison. You can keep including the item at regular intervals, and it helps you to see how small your baby was, and how much they have grown.
- If your baby is small enough you could put your wedding ring, or other ring, over their arm like a bracelet.
- Consider a camera with date/time stamps on the photos so you know when they were taken – it can be difficult to keep track.
- You might want to see if you can leave a disposable camera with your baby for the nurses to take pictures with (however keep in mind that the quality may not be great, and it may go missing).
- Ask if the NICU has a video camera available, some hospitals have a video camera available and you just have to bring in your own film and can then video your baby (easier than bringing in your own video camera).
- If you have twins with similar toys but a different colour (or just different toys) try to include the toy in each picture so that later you will know which twin the photo is of.
- Keep a diary or journal.
- It is great to try to include some personal things like how you are feeling and thinking, and what is going on with you.
- A start is just to include some of the more medical information such as how much oxygen your baby is on and their current weight.
- When you are feeling like your baby isn’t progressing, being able to look back to where they were a month ago can show you how far they have come.
- Another idea is to leave some pages for the nurses to write on that you can stick in the book, just a couple of sentences is enough.
- If you haven’t been told anything about subsidised parking, ask. Most hospitals offer some sort of parking discount for the families of long term patients.
- Check if meals can be provided for you, or if you can get meal vouchers for the cafeteria.
- Find out if there is accommodation available within the hospital or nearby for when your baby is struggling and you don’t want to leave.
- If you live a long way from the hospital, the hospital should be able to help you find accommodation nearby eg a Ronald McDonald House or similar.
Interacting with your baby/babies
- Once your baby is relatively stable, you should be able to start doing some of the care yourself.
- You can hold your baby even with wires and tubes attached. Very premature babies have skin that is thin and fragile. So they may not be able to cope well with being touched. But as your baby grows and develops, touch can be pleasant for you and your baby. Depending on your baby’s gestational age, NICU staff may suggest:
Containment: This means putting your hands and arms on either side of your baby while the baby lies in bed. Preemies like this because it’s much like what they experienced in the womb.
Light touch: Stroking your baby may be too much stimulation. A steady touch is best.
Kangaroo care: When your baby is ready, skin-to-skin contact is the next step. This is your chance to hold and cuddle your baby. Adjust your shirt so you can hold your baby against your bare skin. Cover your baby with the shirt or a blanket to stay warm. Kangaroo care can be relaxing for you and your baby. It may also help your baby recover better or more quickly from some of the medical problems preemies have.
Non-nutritive (comfort) breastfeeding: Because of tubes in the mouth and taped to the face, babies in the NICU sometimes develop “oral aversion.” Holding your baby and having your baby suckle, even without getting any milk, can help your baby overcome oral aversion. It may also make feeding easier later.
- If you haven’t been shown how to change a nappy or wipe the eyes or mouth, ask, things like that can easily be done by parents rather than the nursing staff. Bed baths, “proper” baths, and gently rubbing oil into dry skin are other cares that parents can do.
- Bring in prem sized clothes to dress your baby in (great for taking photos to show size too, as you can keep the garment). Make sure the clothes have been washed and are named. Provide a few spare sets in case your baby needs to be changed, and make sure there is somewhere (eg a bag) for the dirty ones to be put for you to take home and wash (if they end up in the hospital wash, you may never see them again).
- If the baby has relatives who can sew (eg grandparents) they may be able to make something appropriate for the baby to wear, and it will help them to feel involved with the baby.
- Check with the hospital as to what clothing is appropriate. It will need to be easy to get on and off if your baby is still on oxygen or has other medical needs. Some hospitals won’t allow clothing until your baby has reached a certain stage. Some hospitals sell clothing, you may also be able to find some on our.
- Get the nurses to go through and explain not only the equipment and their settings but also the medical charts and how to read them … you’ll know exactly what your baby did and what tests were done without having to ask the nurses. Remember to ask for clarification about anything you don’t understand or aren’t sure about. If the nurse doesn’t explain enough, or you don’t understand the first time, ask again. It can be hard to take everything in all at once. Speak to the doctor concerned if you need more information.
- Ask as many a question as you want … it is your baby, and you have every right to know what is happening to him/her.
- Some hospitals have a training session available where they officially teach you how to do tube feeds (what to watch for etc) and you can then help do the feeds even if you aren’t breastfeeding (a nurse just has to be on-call should you run into trouble).
- Ask for foot and hand prints if possible. They grow so quickly you won’t remember how small they were.
Baby/ Babies family
- As a parent, you can most likely stay with your baby throughout the day. Talk to your baby’s nurse about when you can visit. Your baby’s brothers, sisters, and grandparents may not be allowed in the NICU, or may be able to make only short visits. This is to protect your baby from infection and from too much excitement
- Find out how many visitors your baby may have at once, and if there are restrictions on who.
- Take Tissues – nurseries have them but not always enough.
- Get dad involved as much as possible – but don’t push him – some dad’s can’t cope with full term babies, let alone prems. By the same token some dad’s might feel left out or pushed away. If there are any problems, find out if there is a male nurse or doctor that can talk to the father and support him.
- Ask to see a lactation consultant or a social worker etc if you feel the need … these services are usually available even though they may not be directly offered to you. Dad’s can make use of the social work service too.
- Find out if there are any talks for parents (or grandparents). Read noticeboards regularly. Check in the Parent’s Room to see if information is posted there.
- It is important to realise that you and your baby have rights. If you are not sure about something, ask for a second opinion. Make sure you understand the risks and side effects of any treatments offered to your child. Just as you can say “yes”, you also have the right to say “no” to participate in research trials if you don’t want to do it. Whether you are a public or private patient, you have the right to ask for the options to be presented to you, and to ask for a different doctor to take a look at your baby and to give his/her suggestions about treatment.
- Find out if the hospital offers a support group, or at least try to get to know some of the other parents who also have their baby in the NICU. Get contact details from them, you might see them every day while your babies are in hospital, but once you go home you will need a phone number or email address to keep in contact.
Creating a Soothing Environment
Preemies can be very sensitive to touch, sound, bright light, and other forms of stimulation. To keep your baby as comfortable as possible:
- Let your baby sleep when he or she needs to.
- Keep noise and bright lights to a minimum.
- Try not to bang things on the incubator, talk in a loud voice, or slam doors.
- If lights seem too bright, ask a nurse if you can drape a blanket over the incubator.
Other Ways You Can Be Involved
- Personalize your baby’s environment. But first, check with a nurse about what is and isn’t allowed and what’s safe for your baby.
- When your baby is awake, talk or sing in a quiet voice.
- Participate in your baby’s care as advised by your baby’s nurse. This may include changing nappy, breast or bottle feeding, or taking your baby’s temperature. If your baby is very sick, NICU staff may need to take on more of these tasks, but there is always something you can do.
- Work with NICU staff to develop a plan of care for your baby.
- Share your sense of how your baby is doing with NICU staff. As you get to know your baby, you may notice subtle changes that nobody else does.
How Premature Babies Express Themselves
Premature babies tend to move less and make less noise than full term babies. Their facial expressions are more subtle. Below are some signs you can look for that can help you learn your child’s different moods
Signs of stress
- Tremors, twitches
- Holding arms or legs out stiff, or arching the back
- Gasping, fussing, or crying
- Lack of response
- Colour changes
Signs of contentment or pleasure
- Relaxed arms and legs
- Looking around
Parts of this article contain information from the Royal Brisbane & Women’s Hospital
Ph: (07) 3636 8111
The Royal Brisbane & Women’s Hospital Research Foundation’s Perinatal Research Centre (PRC) is Australia’s largest facility specialising in the research of premature delivery and has been instrumental in improving survival rates for premmie babies.