Premature or ill babies

Special care is sometimes provided on the ordinary postnatal ward and sometimes in a specialist newborn (neonatal) area. Having a baby in neonatal care is naturally worrying for parents and every effort should be made to ensure that you receive the information, communication and support that you need. Not all hospitals provide specialist neonatal services, so it may be necessary to transfer your baby to another hospital.

Why babies need special care

Babies can be admitted to neonatal services for a number of reasons: 

  • they are born early – one baby in 13 (8 out of 100) is born early, and babies born before 34 weeks may need extra help with breathing, feeding and keeping warm
  • they are very small and have a low birthweight
  • they have an infection
  • their mother has diabetes
  • the delivery was very difficult or they have jaundice
  • they are waiting for, or recovering from, complex surgery

Contact with your baby

The environment of the unit may seem strange and confusing, especially if your baby is in an incubator or on a breathing machine. There may also be tubes and wires attached to their face and body. Ask the nurse to explain what everything is for and to show you how you can be involved in your baby's care. Once your baby is stable, you will be able to hold him or her. The nurses will show you how to do this and your baby will benefit greatly from physical contact with you.

Feeding

To begin with, your baby may be too small or too sick to feed themselves. You may be asked to express some of your breast milk, which can be given to your baby through a tube. A fine tube is passed through his or her nose or mouth into the stomach. This won't hurt them.

Breast milk has particular benefits, especially for sick or premature babies, as it is enriched with proteins (notably antibodies), fats and minerals. If your baby is unable to have your breast milk to begin with, it can be frozen and given to them when they are ready.

When you go home, you can express milk for the nurses to give while you are away. There is no need to worry about the quantity or quality of your milk. Some mothers find that providing breast milk makes them feel that they are doing something positive for their baby.

Incubators

Babies who are very small are nursed in incubators rather than cots, to keep them warm. You can still have a lot of contact with your baby. Some incubators have open tops, but if your baby's incubator doesn't you can put your hands through the holes in the side of the incubator to stroke and touch your baby.

When your baby is stable, the nurses will be able to help you take your baby out of the incubator and show you how to have skin-to-skin contact. You should carefully wash and thoroughly dry your hands before touching your baby. You can talk to your baby as well – this can help both of you.

Newborn babies with jaundice

Jaundice in newborn babies is common because their livers are immature. Severely jaundiced babies may be treated with phototherapy (light therapy). The baby is undressed and put under a very bright light, usually with a soft mask over their eyes. The special light helps to break down the chemical that causes jaundice. It may be possible for your baby to have phototherapy by your bed so that you don't have to be separated.

This treatment may continue for several days, with breaks for feeds, before the jaundice clears up. In some cases, if the jaundice gets worse, an exchange transfusion of blood may be needed (some of your baby's blood will be removed and replaced with blood from a donor). This is not common. Some babies have jaundice because of liver disease and need different treatment. A blood test that checks for liver disease is done before phototherapy is started.

Babies with jaundice after two weeks

Many babies are jaundiced for up to two weeks following birth. Jaundice can last up to three weeks in premature babies. It is more common in breastfed babies and does no harm. It is not a reason to stop breastfeeding.

It is important to see your doctor if your baby is still jaundiced after two weeks. You should see the doctor within a day or two. This is particularly important if your baby's poo is chalky white. A blood test will distinguish between "breast milk jaundice", which will go away by itself, or jaundice that may need urgent treatment.

Babies with disabilities

If your baby is disabled in some way, you will be coping with a lot of different feelings. You will also need to cope with the feelings of others, such as the baby's father, your relations and friends as they come to terms with the fact that your baby has a disability.

More than anything else at this time, you will need to talk to people about how you feel, as well as about your baby's health and future.

Your GP, a neonatologist (doctor for newborn babies), paediatrician (children's doctor) or your health visitor can all help you. You can also contact your social services department for information about local organisations that may be able to help. You can contact your social services department through your local authority.

The organisations listed here can offer help and advice – many are self-help groups run by parents:

Talking to other parents with similar experiences can often be the most effective help.

Worries and explanations

Hospital staff should explain what kind of treatment your baby is being given and why. If they don't, ask them. It's important that you understand what is happening so that you can work together to make sure that your baby gets the best possible care. Some treatments require your consent to go ahead and the doctors will discuss this with you.

It is natural to feel anxious if your baby needs special care. Talk over any fears or worries with the hospital staff. Hospitals often have their own counselling or support services, and a number of charities run support and advice services.

The consultant neonatologist or paediatrician should arrange to see you, but you can also ask for an appointment at any time if you wish. The hospital social worker may be able to help with practical issues such as travel costs or help with looking after children.

 

healthtalk.org has video interviews and articles on women talking about their experiences of having a baby in special care.

Losing a premature twin

Sometimes, a baby dies in the womb (called an intra-uterine death) and labour doesn't start. If this happens, you'll be given medicines to induce (start) the labour. This is the safest way of delivering the baby. It also means that you and your partner can see and hold the baby if you would like to.

Coping with your loss

It is an enormous shock to lose a baby in this way. You and your partner are likely to experience a range of emotions that come and go unpredictably. These can include disbelief, anger, guilt and grief.

Some women think they can hear their baby crying, and it's not uncommon for mothers to think they can still feel their baby kicking inside. The grief is usually most intense in the few months after the loss. 

Find out about coping with bereavement

Some parents find it helpful to create memories of their baby for example, by seeing and holding the baby and giving him or her a name. You may also like to have a photograph of your baby and keep mementos such as a lock of hair, hand and footprints, or the baby's shawl. All this can help you and your family to remember your baby as a real person and can, in time, help you come to terms with your loss.

You may also find it helpful to talk to your GP, community midwife or health visitor, or to other parents who have lost a baby. The stillbirth and neonatal death charity Sands can put you in touch with other parents who can offer support and information.

A post-mortem examination

One of the first questions you're likely to ask is why your baby died. A post-mortem examination can often provide some answers, but sometimes no clear cause is found. A post-mortem may provide other information that could be helpful for future pregnancies and may rule out certain causes.

If it's felt that a post-mortem could be helpful, a senior doctor or midwife will discuss this with you. If you decide on a post-mortem, you'll be asked to sign a consent form.

When the post-mortem report is available, you'll be offered an appointment with a consultant who can explain the results to you and what they might mean for a future pregnancy.

Multiple births

The death of one baby from a multiple pregnancy (for example, if you were expecting twins) is very difficult for any parent. Grieving for the baby who has died while caring for and celebrating the life of the surviving baby brings very mixed and complex emotions. Often, the surviving baby is premature and receiving special care in a neonatal unit, which causes additional concern.

For information and support, you can contact Tamba, the twins and multiple births association

Saying goodbye to your baby

A funeral or some other way of saying goodbye may be a very important part of coming to terms with your loss, however early it happens.

If your baby dies after 24 weeks of pregnancy, you will need to register the birth with the registrar of births, marriages and deaths, even if the baby was stillborn. The hospital may offer to arrange a funeral, burial or cremation. This may be free of charge or there might be a fee.

You may choose to organise a funeral, burial or cremation yourself. The hospital chaplain will be able to help you. You may prefer to contact someone from your own religious community, The Miscarriage Association or Sands about the kind of funeral you want. You don't have to go to the funeral if you don't want to.

Many hospitals arrange a regular service of remembrance for all babies who die before or after birth. Again, you can choose whether or not you wish to attend.

Many parents are surprised by how much and how long they grieve for after losing a baby. Friends and acquaintances often don't know what to say or how to offer support, and they may expect you to get back to "normal" before you are ready.

Sands and The Miscarriage Association can put you in touch with people who have been through similar experiences and can offer support and information.

healthtalk.org has videos and written interviews of people talking about their experiences of stillbirth and neonatal death.

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