Parent Information Guide

Bliss Parent Information Guide Information and support for the families of premature and sick babies

www.bliss.org.uk

Eighth edition, Bliss 2010 Š Bliss/Pete Moore 2010 No part of this guide may be reproduced in any form or by any electronic or mechanical means without prior permission from Bliss.

Bliss Parent Information Guide, is endorsed by the British Association of Perinatal Medicine and the Neonatal Nurses Association.

The information contained in this guide on feeding and Kangaroo Care is supported by UNICEF UK Baby Friendly Initiative. www.babyfriendly.org.uk Supported by the Department of Health.

Bliss 9 Holyrood Street London SE1 2EL t 020 7378 1122 f 020 7403 0673 e enquiries@bliss.org.uk www.bliss.org.uk

Bliss Scotland PO Box 29198 Dunfermline KY12 2BB t 0845 157 0077 e scotland@bliss.org.uk www.bliss.org.uk

Family Support Freephone Helpline 0500 618140 RNID typetalk 018001 0500 618140 Online parent messageboard www.blissmessageboard.org.uk Bliss is a member of Language Line the telephone interpreting service, which has access to over 170 languages.

Bliss Publications 01933 318503 or order online at www.bliss.org.uk Registered charity no. 1002973 Scottish registered charity SCO40878

Acknowledgements Original text written by Pete Moore, 2002.

Edited by Catriona Jones.

With special thanks to the Bliss Medical, Nursing and Parent Advisory Committees.

We are grateful to the following people in particular for their contribution to this edition: Dee Beresford, Executive Officer, Neonatal Nurses Association; David Bishop; John Blackhall; Sara Carbone; Yasmin Conway; Dr Jonathan Coutts, Clinical Director for Neonatology, The Queen Mother’s Hospital Glasgow; Tony Dyson; Hilary English; Dr Andy Ewer, Consultant Neonatologist, Birmingham Women’s Hospital; Professor David Field, President of the British Association of Perinatal Medicine; Professor Linda Franck, Institute of Child Health, University College London; Sharon Goldie, Advanced Neonatal Nurse Practitioner, Crosshouse Hospital Ayrshire; Louisa Hill; Anne Hoyle, Senior Midwife/Neonatal Manager, Crosshouse Hospital Ayrshire; Karen Hudson; Liz Jones, Neonatal Breastfeeding Coordinator, University Hospital of North Staffordshire; Suzanne and Niall Joy; Vanessa Lett; Lynne Marshall; Hyacinth Meyers; Liz Middleton; Dr James Moorcraft, Consultant Neonatologist, Royal Glamorgan Hospital; Caroline Nathan; Tina Pollard, Chair, Neonatal Nurses Association; Karen Shaya; UNICEF UK Baby Friendly Initiative; Alison Wright, Interim Chair, Scottish Neonatal Nurses Group.

Important note to readers This guide has been written to give you a greater understanding of neonatal care and is intended to complement the medical advice you receive from those involved in the care of your baby. It is written principally for parents of premature or sick babies born in the UK and covers aspects of your baby’s care and development – from the moment they are born until you take them home.

Though it is intended to reflect the current practices of neonatal units throughout the UK, there will be some variation between hospitals. For parents and carers in Scotland, please call 0500 618140 or speak to staff on your unit to obtain the Bliss Scotland edition of this guide.

Contents

Contents Section 1

Introduction

A place to support your baby’s needs Why did my baby arrive early?

• Resuscitation immediately after birth • Age (corrected and uncorrected)

Section 2

About neonatal care

Care in neonatal units • Levels of care • Transitional care

• Emotional and psychological support • Religious support

• Change of staff and shift patterns

Standard policies • Routine disinfection • Transferring from unit to unit • Quiet times • Doctor’s round • Finding out how your baby is doing ● Staff on the neonatal unit • Information and rights

• Records and notes • You and your baby’s rights

• Information about your baby that can help future babies

Section 3

• Emotional support • Caring for your baby • Alarming noises

Not what we expected • Normal appearance • Head shape • Growing up Getting to know and understand your baby • Seeing your baby for the first time • Tuning into your baby’s needs Developing a bond with your baby • The caring touch • Comfort holding • Kangaroo Care • Nappy changing

• Feeding • Bathing • Understanding medical procedures • What you will need for your baby

Facts for fathers • About you • People around you • You and your partner • Useful tips

• With your baby • Work and benefits • Keeping going Case study: “I was in a daze” Financial advice for families

Section 4

8 9

11 12

About your baby and about you

How you and your partner might feel

• First impressions • Your baby • Coming to terms with what has happened

2 4

14 18 20 21

26 29 30

What’s happening to our baby?

The equipment on the neonatal unit • Incubators • Vital signs monitors • Oxygen saturation monitors • Tubes

• Ventilators • Reintubation • Back on a ventilator

• Lumbar puncture • Phototherapy • Continuous Positive Airway Pressure • Collapsed lung

Medical procedures • Pain relief • Tubes and wires • Blood tests • Eye tests • Scans • Immunisations

32 35

• Heart problems • Patent ductus/patent ductus arteriosus • Making decisions

Clinical research

Case study: “A rollercoaster ride”

Section 5

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47 48

Feeding

Information about feeding 50 • Parenteral nutrition (PN) • Tube feeding Breastfeeding and expressing milk 51 • Advantages of breast milk • First milk • Supplemented feeds • Fortification

• Breastfeeding and drug use • Infection in mothers/maternal infection • Bottle feeding

Section 6

Saying goodbye to your baby

Palliative care Facing intensive care decisions Bereavement • Caring from the start • If your baby dies • Making arrangements

Section 7

56 56 57

Older children

Your baby’s brothers and sisters Case study: “She was like a doll” ● Visitor policies

60 61 62

Section 8 Home time Going home • Preparing for leaving the hospital • Travelling home • Before you leave

• Temperature

• Long-term medical problems

Home oxygen Respiratory syncytial virus (RSV) Checking your baby’s health

Section 9

67 68 69

About Bliss

Bliss How you can help Section 10

64

72 74

More information and support

Useful organisations and groups Further reading Index

76 81 82

Contents

Medical issues • Chronic Lung Disease • Brain haemorrhage • Infections

Foreword The care of premature and sick newborn babies has developed dramatically over the last couple of decades. Improved technology and advances in medical and nursing care mean that we can now look after babies born very early in pregnancy and more babies who are born with complex medical conditions.

Across the UK, one in nine babies born will spend time in a neonatal unit. To you, the parents and relatives of these babies, the environment of a neonatal unit may be overwhelming, confusing and frightening with many procedures carried out to help your baby and lots of unfamiliar sights and sounds.

You may have many questions to ask about your baby and their treatment, about the unit, the staff and the equipment. You may also have more questions when you take your baby home. This Bliss Parent Information Guide will give you information and support to help you to understand what is happening to your baby and assist you and your family in coping with what you may be experiencing and feeling.

To ensure that this guide will give you and your family the most up to date information, Bliss has worked with all those closely involved in the care of premature and sick newborn babies, including neonatal nurses, midwives, doctors and other parents. There are many people who will help, support and answer your questions - do not be afraid to ask.

Prof David Field

Tina Pollard

President of the Chair of the British Association of Perinatal Medicine Neonatal Nurses Association

1 Introduction A place to support your baby’s needs

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Why did my baby arrive early?

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1 Introduction

A place to support your baby’s needs Welcome to your neonatal unit, the set of hospital wards specially designed and equipped to care for sick newborn babies.

Everyone hopes that their pregnancy will be uncomplicated by any form of emergency. Few people consider the possibility that their baby could be born many weeks before their due date, or might need special care for the first few days, weeks or even months after birth.

The reality is that one in nine babies born in the UK spends at least a few days in a neonatal unit, which in an average year adds up to around 80,000 babies.

There are various reasons why babies are admitted to a neonatal unit. Some are here because they have an infection and need antibiotics, others need extra monitoring, others need breathing support.

In some cases, antenatal ultrasound scans may have picked up a problem.

Many of these babies need no additional support. However, some complications could mean that the baby needs to spend time in the neonatal unit. Occasionally doctors may have found a problem that means the baby will need an operation. In that case, they may need to be transferred to a specialist hospital.

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1 Introduction

The length of a baby’s stay on a unit varies from days to months, and depends on each baby’s needs.

The largest single group of babies in the neonatal unit are there because they were born many weeks before their due date, although there will also be babies that are born at term who need special care. There are many different reasons why babies can be born too early, and usually there is nothing that mothers could have done to prevent it.

Doctors use a number of different terms to describe babies in neonatal units, depending on how many weeks gestation they reached and on their birthweight.

Term

Weeks gestation

Full term

A baby that has spent at least 37 weeks in the womb

Premature

Born before 37 weeks in the womb

Moderately premature

Born between 35 and 37 weeks in the womb

Very premature

Born between 29 and 34 weeks in the womb

Extremely premature

Born at or before 28 weeks in the womb

Low birthweight

Born weighing less than 2,500g (5lbs)

Very low birthweight

Born weighing less than 1,500g (3lbs)

Extremely low birthweight

Born weighing less than 1,000g (2lbs)

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Why did my baby arrive early?

Introduction

1

Babies can be born prematurely for many different reasons.

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•

Pregnancies with twins, triplets or more babies are very likely to end early.

•

Pre-eclampsia occurs in about 10 to 15 per cent of first-time pregnancies, and is responsible for at least 15 per cent of all premature births. It can be dangerous, particularly if it develops rapidly. The main symptoms are headaches and swollen feet, which are associated with high blood pressure. Although bed rest can help, the only way to stop pre-eclampsia is to deliver the baby early.

•

About a third of premature births occur for no apparent reason. Often they happen with little or no warning. It may be that an infection, involving the sack around the baby in the womb, triggered the delivery.

•

Stressful events can start labour early. However, there is no evidence that the normal day-to-day stresses of living can bring on premature birth.

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In some cases, the mother’s waters break early, starting the delivery process. If labour starts while a baby is less than 35 weeks, the doctors will probably give two sets of drugs. One is to delay the labour for a day or two, while the other is to help the baby’s lungs to mature quickly so that they will function better after delivery.

•

Many babies arrive in a neonatal unit because of some emergency. It may be that the mother started to bleed or had high blood pressure, or that there was some problem with the umbilical cord or placenta.

•

In a few cases, an antenatal screening test might show that a baby is not growing well in the womb, normally because there was not enough blood flowing to and from the placenta. If doctors believe that the baby is going to be safer outside the womb, they would advise to have the baby delivered early. In this case, it may be recommended that you have a caesarean section as it puts less stress on the baby.

1 Introduction

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“The nurses were so lovely and very encouraging on the first few days when I kept bursting into tears. They encouraged us to give her a name so that she would have an identity. One of the nurses suggested that I start to keep a diary, which I did the whole time I was in there – it was super advice.”

Liz Middleton, mother of Lara, born at 24 weeks

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Resuscitation immediately after birth

1 Introduction

It may be that your baby had some problems immediately after the birth. In this case, they may have needed help with breathing. Sometimes doctors give ‘cardiac compression’ (rhythmically applying pressure to the chest) to help maintain the blood flow and to help the heart start beating properly.

Resuscitation may also be needed later when your baby is in the unit, particularly if they get a serious infection.

Age (corrected and uncorrected) Uncorrected (or actual) age is the age of a baby from their birth date. For example, a baby born 12 weeks ago is 12 weeks old, even if they were born at 30 weeks gestation.

Corrected age is calculated according to the number of weeks a baby was born before term (40 weeks). So a baby born at 32 weeks’ gestation was eight weeks early. Ten weeks after birth (eg, 42 weeks actual age), their corrected age would be two weeks.

The corrected age is sometimes used by people to compare premature babies to term babies, particularly in the areas of development and weight gain. A baby who is four weeks old corrected may be compared to a four-week-old term baby.

Bear in mind, however, that your premature baby will not necessarily follow the same progress and development pattern as an ‘average’ term baby.

There is now a specialist low birthweight growth chart available, which should automatically be inserted into your baby’s Personal Child Health Record (red book) by your health visitor. Visit www.rcpch.ac.uk to download a copy.

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2 About neonatal care Care in neonatal units

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Standard policies

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Staff on the neonatal unit

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Information and rights

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About neonatal care

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Care in neonatal units Neonatal units specialise in looking after babies who are very young, very small or full term but sick. In many hospitals, the unit is divided into three different levels of care.

Your baby will be in the level that is most appropriate for their needs at that particular time.

Neonatal intensive care (NICU) This level of care is for babies who need breathing support, weigh less than 1,000g and/or were born before 28 weeks gestation. It provides the whole range of medical neonatal care but not necessarily specialist services, such as neonatal surgery.

High dependency This care often involves the continuation of some breathing support and help with feeding, together with some other care needs that babies may have.

Special care (SCBU) This level of care is often referred to as ‘low dependency’. This may involve some tube feeding or some additional oxygen support and light therapy for jaundice (phototherapy).

Transitional care This is the final level of care available at some but not all hospitals, and usually takes place a few weeks before the baby is ready to go home. Babies in transitional care will still have medical needs, but at this stage the staff on the unit will have decided that parents are able to carry out the necessary procedures themselves. While in transitional care, staff will ensure families know all about their baby’s specific needs and how to deal with them themselves. This stage is specifically designed to look after both the baby’s and the family’s needs.

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Emotional and psychological support

You can also call the Bliss Family Support Helpline on 0500 618 140, or go to www.bliss.org.uk for information and advice. For more details on emotional support, see page 15.

Religious support

2 About neonatal care

Having a baby admitted into neonatal care is a difficult time for many parents, and it is normal to find yourself needing to talk to someone besides your friends and family. Many units have a counsellor or psychotherapist as part of their staff to look after parents. It is important that you take advantage of these services if you need them.

All hospitals have a chaplaincy or multi-faith prayer room. People from various religious groups staff this centre. Ask the staff on the unit or at the hospital reception if you would like to speak to someone there, or ask if they could come and see you instead.

The chaplaincy or multi-faith prayer room also has contact details for members of different faith groups who live near to the hospital and have volunteered to come and visit anyone who would like to see them. Staff on the unit should be able to help you to get in touch with them.

Standard policies Each unit works slightly differently, but there are standard policies that will apply wherever you have been admitted. The key ones are explained here.

Routine disinfection All people entering neonatal units must wash their hands and forearms with a special disinfectant and, after drying, apply the hand gel provided to reduce the chances of babies being infected by bacteria from outside the unit.

Transferring from unit to unit Your baby may need to move to another hospital capable of offering more specialist care. If so, specialist transport teams will go with your baby and support them during the transfer. They will bring with them a high-tech transport incubator that is capable of full intensive care support throughout the journey. It may not be possible for you to travel with your baby during this transfer but the transport team will be with them the whole way.

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About neonatal care

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Quiet times Some neonatal units have quiet times to give babies time to rest. They are usually between midday and 2pm.

The nurseries will have the lights dimmed and curtains drawn, and during this time care staff will try to disturb your baby as little as possible. Parents are usually welcome to visit at this time.

Doctors’ round The doctors’ round is usually twice a day – morning and evening. During the morning round, the staff will plan your baby’s care. The evening round allows the day-time and night-time staff to coordinate their care.

During these ward rounds you are welcome to join in when your baby’s care is being planned, but you may be asked to leave the unit when other people’s babies are being discussed.

Finding out how your baby is doing The nurse caring for your baby will be able to update you on their progress when you visit or telephone the unit. You can also ask to see the medical staff for an update on the condition of your baby. An appointment can always be arranged for you to see the consultant at a time suitable to you. Doctors and nurses are normally around 24 hours a day.

Remember, you can also ring the ward, day or night – someone on the unit will give you the direct line telephone number.

Change of staff and shift patterns The neonatal unit is staffed 24 hours a day, and staff caring for the babies will change throughout the day. The exact pattern will vary from unit to unit.

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Staff on the neonatal unit All the staff on the neonatal unit work as a team to provide the best care for your baby. The main day-to-day care will be provided by nurses.

Neonatal nurses are trained to provide intensive and high dependency care and nursery nurses care for the babies when they are bigger and stronger.

The team of doctors is led by consultants and they supervise the medical care of your baby in partnership with the nurses, midwives and the paediatric doctors in training (specialty registrars).

About neonatal care

2

Some nurses have taken further training to become advanced neonatal nurse practitioners (ANNPs) or nurse consultants. These nurses often perform similar duties to the doctors.

Neonatal units work with many other health professionals, such as physiotherapists, who help with your baby’s physical development, dieticians, who will make sure that your baby gets the best nutrition possible, speech and language therapists, who will assess and help your baby’s feeding and swallowing, and pharmacists who look after the medicines prescribed for your baby. An ophthalmologist may check your baby’s eyes and audiology technicians will check your baby’s hearing.

If your baby needs x-rays, these may be taken by radiological technicians and ultrasound scans may be made either by a radiological or neonatal consultant.

You may also meet foundation doctors, medical students and nursing and midwifery students. You should always be asked beforehand if you don’t mind them observing or examining your baby. Finally, equipment is maintained by a team of electronic medical engineers and technicians.

Many units also have a counsellor or psychotherapist for parents to talk to during difficult times; if there isn’t a counsellor on site and you feel you need some extra support, speak to the staff and they will refer you to someone outside of the unit.

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About neonatal care

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Information and rights

Records and notes All the daily care and activities will be recorded in your baby’s bedside notes.

You are free to read these at all times.

Your baby’s medical notes on the other hand are protected by the Data Protection Act which states that only people involved in the care of your baby can see them.

If you would like copies of these medical notes, you will need to talk to the consultant. There may be a small charge for copying.

You and your baby’s rights The doctors and nurses on the unit will always do their very best for your baby.

It is important that you are involved in your baby’s care and that you have all the information you need to make decisions for them, with the advice and guidance of doctors and nurses. You have an important role in ensuring your baby is always treated with respect and dignity and in encouraging a positive relationship with the staff who care for them.

There may be times when you want a second opinion or disagree over treatment. For advice and information, call the Bliss Family Support Helpline on 0500 618140.

If you are unhappy about any aspect of the NHS service, contact your local Patient Advice and Liaison Services (PALS) through your hospital or by calling NHS Direct on 0845 4647. You can also talk to the Patients Association on 0845 608 4455.

Information about your baby that can help future babies It is very important that doctors and nurses looking after premature babies know about problems that may develop in the future. For this reason, it is likely that you will be asked for your permission (consent) to allow information about your child’s future health to be collected. Such information will always be kept confidentially. It is up to you whether or not to give permission. By giving your consent, you will be helping the staff to improve the care they provide and to help babies in the future.

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3 About your baby and about you How you and your partner might feel

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Not what we expected

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Getting to know and understand your baby

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Developing a bond with your baby

21

Facts for fathers

26

Financial advice for families

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How you and your partner might feel

About your baby and about you

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First impressions If you are shocked when you first walk into the neonatal unit, you are not alone. It is very likely to be different from almost any other place you have been, and you may have just experienced one of the most traumatic episodes of your life. The room is full of monitors, high-tech equipment and the frequent sound of alarms.

Many babies in the neonatal unit are extremely tiny and immature. The equipment that surrounds them is designed to keep them warm, to monitor many of their bodies’ functions and to support their breathing.

All of the staff know that you are under stress, and they are there to help you as well as your baby.

Your baby Remember that in the middle of all the stress and heartache, you have just had a baby. This situation might not be what you had in mind for the first few days of your baby’s life, but it is still good to be congratulated and celebrate the fact that you have a new member in your family.

Coming to terms with what has happened In some ways, you have just suffered a loss. Although your baby is alive and being looked after, you may feel you missed out on a normal pregnancy, or worry that you can’t go straight home with your baby as you had hoped. Many people find this to be an emotional time, and that the support of family and friends helps them in some way.

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Emotional support

Bliss can put parents of sick or premature babies in touch with British Counselling and Psychotherapy (BACP) accredited counsellors. Call the Bliss Family Support Helpline on 0500 618 140 for more information. Bliss also runs ‘Parents 4 Parents’ – a network of trained parent volunteers whose babies have been in neonatal units and are able to offer telephone support to other parents in a similar situation. You can also visit www.bliss.org.uk and have a look at our interactive parent messageboard.

Discussing your feelings with other parents can help. Many units run groups where parents meet to share their experiences or simply to have a coffee and a chat. Parents who have been to such groups often say that it helped them to feel less alone and more supported. Bliss also run support groups which are led by parents who have had a baby in special care. They will hold regular meetings for parents to share advice and experiences of having a premature or sick baby, as well as lots of different activities. Speak to the Bliss Family Support Team on the Helpline for details of your nearest group.

3 About your baby and about you

The next weeks and months are likely to have days of stress and worry, so it is good to know of people who can help you. Some people find it is easier to talk about their feelings and worries to someone who doesn’t know them. There are members of staff on the unit, including counsellors and psychotherapists, available to listen and give you support.

If your unit does not have a counsellor, another member of staff or your GP may be able to refer you to someone. See also the listings of useful organisations in Section 10.

“Thanks so much for our chat this morning, my shoulders feel a lot lighter! ... I will take a look at the Bliss website in more depth and possibly even post something on the messageboard... Thanks for all the information you sent to me as well; it’s time I stopped being so stubborn and talked more to people that are in similar situations...”

From an email to the Bliss Family Support Team

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3 About your baby and about you

Caring for your baby The doctors and nurses are all highly skilled in giving your baby the best care possible. For you, however, caring for your baby on the unit may seem frightening and strange.

To start with, the staff may do most of the work, and it is easy to begin to feel as if you are not needed. This is not true. You are a very important member of the team. Staff will encourage you to become involved and understand what is happening to your baby.

One of the things you can do immediately after your baby is born is to start expressing breast milk. This may be difficult for the mother, depending on how early the baby was, but it is a worthwhile effort. Dads will play a very important role in supporting their partners through what may be a slow process. The mother’s breast milk can be frozen and kept until your baby is ready for it.

Breast milk, and especially colostrum (the first, thicker milk that is produced when you begin expressing), is very rich in antibodies and nutrients which will help your baby to grow and get stronger. You may decide to breastfeed eventually; expressing milk from the first few hours after birth will mean you will have this option when the time comes. For more information on expressing and breastfeeding, see section 5.

In addition to comfort holding and Kangaroo Care (see pages 22 and 23), you can be involved with washing your baby, changing nappies, giving them water on a sterilised sponge, taking their temperature and helping with feeding. As you learn and your child grows stronger, you should be able to do more.

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Karen Hudson, mother of Amy, born at 31 weeks

Alarming noises Each piece of equipment on the unit is fitted with alarms that are designed to warn the staff of any problems. These alarms are very sensitive and are often triggered by a baby making a sudden movement, such as waving an arm or leg.

This means that alarms are constantly going off around the unit. The staff will respond to these quickly if required.

It could take you some days before you begin to recognise the difference between ‘routine’ alarm noises and ones that mean your baby needs more immediate help.

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3 About your baby and about you

“I really didn’t like the constant sound of monitors and alarms; until we got to know what they all meant, it felt like the staff were ignoring babies who might have needed help. Of course they weren’t and slowly, once we knew about ‘reading the traces’, it all just became part of the background noise.”

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3 About your baby and about you

Not what we expected Depending on how early your baby was born or how unwell they are, you may be shocked when you see them for the first time. Premature babies may appear thin, with very little body fat, and look quite different from most term newborn babies you may have seen before. They are certainly not like the smiling, chubby babies that grin at you from glossy magazines and adverts.

This is simply because they are at an earlier stage of development, as they were born early.

Normal appearance Many premature babies have a fine covering of dark hair. Doctors call this ‘lanugo’. It is normal and has been stimulated by the baby receiving some of the mother’s hormones while in the womb. It soon goes away.

If your baby is very premature, they may only be the length of your hand and may well sleep almost 20 hours each day. Their skin could seem waxy at first, and it may also be transparent because there is little or no fat beneath it.

This means that you can see a fine network of blood vessels. Very premature babies are sometimes also born with their eyes temporarily fused shut.

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Head shape The skull bones of premature babies are quite soft. If the head lies on a hard flat surface for long, it can develop a flattened shape. A soft pillow or a water pillow may prevent this happening. By the time the baby is mature enough to go home, the skull bones will have hardened up and a pillow will not be needed. Pillows should not be used for any baby at home as they can be unsafe.

About your baby and about you

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Growing up By the time your baby reaches the date that they were expected to be born, they are unlikely to look very different from a full-term baby of the same weight. The difference is that you can see a premature baby at an age when they would normally still be in the womb.

“She was so fragile… I couldn’t hold her properly for two weeks. I do remember lifting her up in her incubator for the nurse to change her sheet, and I was overwhelmed by the feelings I had for her. When I did eventually hold her for the first time, it was amazing.”

Liz Middleton, mother of Lara, born at 24 weeks

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About your baby and about you

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Getting to know and understand your baby Seeing your baby for the first time If doctors delivered your baby by caesarean section or rushed your baby to another hospital immediately after the birth, it could take a few days before mum and dad are able to see them. This can be very distressing, particularly for mum, as she may be less able to visit. Dad, on the other hand, may well be able to visit and see how the baby is. In some situations, you may want to ask a friend to come. You may also be able to take a photo of your baby to bring home – many neonatal units have digital cameras for this purpose.

Tuning into your baby’s needs Many neonatal units work hard to reduce the amount of noise and activity around each baby. This can be difficult to organise, but your baby needs as much rest as possible, and research has shown that they can easily become overstimulated.

Having said that, it is important that your baby gets to know you, your voice and your smell. While the staff will be trying to handle your baby as little as possible, it is good for you and for your partner to spend time talking to and touching your baby.

All of the equipment around can be distracting. The displays are designed to be easily seen and grab attention. Try not to be overwhelmed when you see your baby surrounded by equipment. Keep focused on your baby as much as possible. Remember that the staff constantly check the monitors, so you can spend your time watching your baby.

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When you imagined having a baby, you might not have thought that you would be separated from them. If your baby is sick or premature, this is very likely to happen. As a result, it could take you a little longer to form a bond.

This is perfectly normal, and happens to many parents.

The caring touch See our free booklet Look at me I’m talking to you for further information.

In order to look after your baby, the staff will carry out many medical procedures. Some of these can cause your baby discomfort, so they need to be balanced by providing a positive, reassuring touch. As the baby’s parents, you are the best people to give this support.

About your baby and about you

Developing a bond with your baby

There are various ways you can comfort your baby. Ask the staff to show you which is most appropriate. The choice may depend on a number of things, but the most important of these is seeing how stressed your baby is on any particular day. There could be days when your baby is so tired that the staff will suggest you keep contact to a minimum. These should become less frequent as your baby makes progress.

There will rarely be a day when you can’t at least hold your baby’s hand.

There are many things you can do to form a bond with your baby. Your baby learns to know you through all their senses; your smell, your voice, eye contact, as well as your loving touch. You’ll have a chance to sit and talk to them at most times on the unit. Some units will let you put a T-shirt inside the incubator for them; ask the staff before you do. Once your baby is stable, ask your nurse if you can practise comfort holding and Kangaroo Care.

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Comfort holding

About your baby and about you

See our free Comfort holding poster for further information.

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Your baby may be much more comfortable lying in the incubator than being held. In this case, the staff may suggest that you try comfort holding if they think that your baby is well enough. Comfort holding is ‘still touch’ rather than than stroking or patting, which can be overstimulating. This kind of positive touch coupled with your voice and smell can help reduce your baby’s stress levels and promote a sense of calm for you and your baby.

It is particularly soothing for your baby during uncomfortable procedures, and can help your baby settle after feeds and cares.

You should always speak to the staff on your unit before practising comfort holding. You will be shown how to recognise certain signals from your baby which will guide you as to how and when to try this form of contact.

Remember to always remove wrist watches or jewellery and wash and dry your hands and lower arms before doing this. This reduces the chance of introducing an infection into the incubator.

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Kangaroo Care If your baby is well enough, you will be able to plan a good time and comfortable place with the staff on the unit to try Kangaroo Care – this is skin-to-skin contact when a baby is held directly against their parent’s chest.

Do not be afraid to ask if and when you can try Kangaroo Care. With careful planning and collaboration with the neonatal staff, Kangaroo Care can even be used with babies with high medical needs. If your baby is happy and warm (a hat or blanket may be needed), mums and dads alike can cuddle for as long as you are both comfortable. Kangaroo Care is often the first time parents feel that they are really having contact with and looking after their baby, and it can be a great way of establishing a lasting attachment.

About your baby and about you

See our free Kangaroo Care poster for further information.

Kangaroo Care has many other benefits, including: • • •

improvements with milk flow and establishing breastfeeding greater weight gain for the baby tendency to sleep more deeply which supports their health and development.

“Kangaroo Care not only helped the twins to get better, but also helped us to bond with them when we felt so detached and helpless. We spent hours giving skin to skin… It was precious time spent with the girls.”

Louisa Hill, mother of Imogen and Isobel, born at 28 weeks

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Nappy changing Over time, staff will start to show you how to do some of the routine tasks, like changing a nappy. This is a good way for you to do more and to take an active role in your baby’s day-to-day care. You may well feel all fingers and thumbs to start with. Don’t worry, practice makes perfect.

Feeding Feeding your baby is a superb way of helping care for them, particularly as it is the time when babies in special care are most likely to be awake.

The variety of ways that babies can be fed is explained in Section 5.

Bathing To start with, the nurses may be very reluctant to wash your baby. The problem is that washing, even with warm water, could cool the baby down, which is something that they want to avoid. The little flakes of dried-on blood and waxy ‘vernix’ (white substance which coats the skin of newborn babies) from life in the womb will do no harm and are best left where they are.

Once your baby has grown a little and is stronger, you may be able to join in with the fun of bathing. It can feel a little daunting at first, but it won’t take long before you feel confident to do this with little or no help from staff.

“I did find doing Amy’s cares (changing her nappies, keeping her mouth moist and washing her) very intimidating at first, but later on, especially when she came out of the incubator, it became a great way to bond too.”

Karen Hudson, mother of Amy, born at 31 weeks

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You will be in a better position to look after your baby once you understand what the doctors and nurses are doing. Feel free to ask questions. You may want to keep a small notebook with you so that you can jot down any questions as they come into your mind. Some people find this helps them to remember questions they want to ask the staff. You may also find it helpful to write down their answers. It is better to have your questions answered than to go away with unnecessary worries.

If you would like to have another member of staff, a member of your family or close friend with you when you meet with your baby’s doctor, it is quite alright.

About your baby and about you

Understanding medical procedures

What you will need for your baby To begin with, and for a short while, the hospital will provide you with everything your baby needs, but you are likely to be asked to bring in some of your own things, including premature baby nappies, cotton wool balls and clothes. Each unit will differ and the staff will be able to advise you on what you will need.

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About your baby and about you

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Facts for fathers See our free booklet Facts for Fathers for further information.

About you This can be a tough time for fathers. While the mother and baby tend to get the majority of the attention and concern, you are very emotionally and physically involved and, on top of this, you may often have to look after other family members as well as keep going to work. It can be particularly difficult if you have a full-time job and are not used to organising every day for the family.

People around you Family and friends may also be worried about the baby, and are often anxious to know how they can help without getting in the way. People around you can be a big help, especially if you give them specific things to do. Some parents have said that friends coming round with a meal can take the pressure away of an evening, as can picking other children up from school or looking after them for a few hours.

With a bit of forward planning, you can spend some unhurried time in the hospital, supporting mum and getting to know your new baby.

A good way of saving time is also to keep one friend fully informed on how the baby is doing, so that everyone else can contact that person for updates.

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Mums and dads both go through an emotional rollercoaster when a baby is born early, but they may react in very different ways. It’s important that you try to keep in tune with your partner’s situation, and be as supportive as you can.

• • • •

Your partner will have to cope with the physical effects of having had a baby, including hormones and low moods.

She may be trying to express milk for your baby, which can be hard at first.

She may have had a difficult pregnancy, and may still be unwell now.

She and the baby may have had to be admitted to different hospitals.

Some useful tips • • • •

Don’t keep problems to yourself. Talk to your partner, friends and family, or the advisors on the Bliss Family Support Helpline.

Try to agree with your partner how you will take turns with the baby, caring for other children and the work around the house, if this is appropriate.

Be kind to yourself and your partner. No one is at their best when they are stressed or exhausted.

Take time to just be together. Try to have a break from the baby to do this, if you can. Do small favours for one another to make life nicer and easier.

About your baby and about you

You and your partner

With your baby It’s not uncommon for dads to feel like they don’t want to get too attached to their baby, in case something goes wrong. But the love and care a dad can give can make a huge difference to a baby’s health.

There are many ways in which you can be involved in caring for your baby in the same way as your partner – for example, with bathing, nappy changing, Kangaroo Care and comfort holding (see pages 22 and 23). Joining in will help you and your baby get to know each other, as well as take some pressure off your partner.

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Work and benefits Many fathers feel pressured to work even when the family is going through difficulties. You may be the main person with an income in the family; you will need to inform your employer of the situation and organise your workload and any time off (you may be entitled to paternity leave).

You may be unemployed and receiving benefits; it may fall to you to sort out what extra benefits you can claim now you have a premature or sick baby.

See page 30 for more information.

When you are back at work, try to prioritise tasks so you don’t end up spending too much time away from your family. Someone else might be able to cover for you; they may be happy for the chance to help you out.

Try to keep a long-term perspective. You probably won’t have the same job 30 years from now – but you will always be a dad.

Keeping going Most new parents put their own needs second. It is hard to juggle running your home, work and visits to the hospital. But it is really important to look after yourself so that you can keep going. Mother and baby need you! No one else can do it quite like you.

Look after the basics, like eating well and getting enough sleep. Try not to ‘bottle up’, but talk about how you are feeling to someone who understands. Your GP or counsellor may also be able to help.

Remember that you are not alone; one in nine babies born needs special care. Speaking to another dad who has been through a similar experience may be a big help. Call the Bliss Family Support Helpline and ask about the Parents 4 Parents network.

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“I was in a daze”

T

ony Dyson had just started a new job when his son AJ was born early at 28 weeks. He arrived early after Tony’s partner Nicola developed dangerously high blood pressure and Tony discovered her having seizures in the middle of the night. Nicola was rushed to hospital for an emergency delivery.

The first few hours were a blur, he remembers. “My head was all over the place, I never got to be at the birth, and I wasn’t told how Nicola was...

I didn’t get to see the baby either. When I did see him, he was just a little bundle in the incubator, with tubes coming out everywhere.”

The worst thing for Tony was feeling so helpless and being unable to hold his baby. “You can’t do anything for him, you can just look at him through a glass.”

Because Nicola was so seriously ill, she can’t remember anything about the birth. She will always be grateful for Tony’s quick action when she took ill and for his support while she recovered in hospital.

While they were waiting for AJ to come home, Tony kept up his hospital visits every day, coming straight from a long day at work – he only had a day off after AJ was born.

Nicola sums up Tony’s success as a father and a partner: “He was brilliant the whole 11 weeks AJ was in hospital, and he is still brilliant now.”

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About your baby and about you

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Financial advice for families See our free booklet Financial advice for families for further information.

Some families experience financial difficulties because their baby is in a neonatal unit. In this case, there may be opportunities to claim benefits for help. It is important to make any claims as soon as you can, as it is difficult to get benefits backdated.

You are entitled to claim Child Benefit as soon as your baby is born. Forms are available online from HM Revenue and Customs’ website or from your local Jobcentre Plus office or Post Office.

All babies and mothers are entitled to free prescriptions and dental treatment until their baby is 12 months old, uncorrected age (that is from their actual date of birth).

If you are claiming Income Support or income based Jobseeker’s Allowance, there may be other benefits you are entitled to, such as the Sure Start Maternity Grant, Community Care Grants, free vitamins and milk vouchers and help with fares to and from the hospital. You may also be entitled to Carer’s Allowance and Disability Living Allowance (for example, if your baby goes home on oxygen).

Your local Citizens Advice Bureau can also help and the Department of Work and Pensions (DWP) produce a number of useful leaflets. Trade Unions and staff associations often also provide free advice to members. See Section 10 for contact details of all these organisations.

You can also contact the Bliss Family Support Helpline for further advice.

Talk to your employer and discuss your options. They may be more flexible than you might think at first.

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The equipment on the neonatal unit

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Clinical research

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The equipment on the neonatal unit Neonatal units are full of equipment you may not have seen before. It is all there to give your baby the best possible chance of a healthy future.

Incubators A basic need for your baby is to keep warm. Placing a premature or sick baby inside an incubator will help do this. Some incubators are closed boxes with hand-sized holes on the side. Being in a closed box not only keeps the heat in, but also helps to control the humidity by circulating moist air around the baby.

This prevents the baby from losing too much moisture by evaporation from their fine skin.

Other incubators have open tops and have an overhead heater. These give staff greater access to the baby. For very premature babies, keeping the air warm and moist is necessary to maintain fluid balance and body temperature until your baby is strong enough to manage this on their own.

The temperature inside the incubator can be regulated in two ways. It can be set manually with the controls, or set to automatically respond to information about the baby’s temperature that is picked up by a small sensor placed on their skin. If the sensor falls off, or does not pick up the baby’s temperature, this will trigger an alarm so that a nurse can make sure the incubator does not become too warm.

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Small pads may be placed on the baby’s chest with cables running to a monitor. These pick up the electrical signals given out by the baby’s heart and constantly check that it is beating properly. The pads can also detect changes during breathing; pauses in breathing may trigger an alarm.

Oxygen saturation monitors This device, normally strapped gently to the baby’s foot or hand, shines light through the skin and monitors the amount of oxygen in your baby’s blood.

Tubes Several different tubes may be used on or around your baby. Please see page 37 for more detailed information.

Ventilators

See our free booklet Ventilation and Chronic Lung Disease for further information.

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Vital signs monitors

In the mother’s womb, a baby receives all of the oxygen they need from the mother’s blood; the oxygen then passes into the baby’s blood across the placenta and through the umbilical cord. Once born, all babies have to get their own oxygen by breathing.

This can be a particular problem for very premature babies. There are two main reasons. Firstly, their lungs may not be fully developed, and secondly, the baby may be unwell and very weak. In both these situations, it is likely that the doctors will choose to help the breathing by putting a tube into the baby’s windpipe and attaching this to a breathing machine (ventilator).

These machines drive air through a tube placed into the baby’s windpipe (the trachea). There are currently two basic types of ventilators in use.

•

Positive pressure ventilators (the most common) blow oxygen-enriched air gently into the baby’s lungs through a tube that is passed through their mouth or nose. These ventilators inflate the lungs. The rate of breathing will be regularly adjusted to meet your baby’s needs.

•

High frequency ventilators blow small amounts of air into the lungs hundreds of times a minute. The baby’s chest appears to vibrate, and though this may look alarming, this type of ventilation works extremely well for some lung conditions.

The staff looking after your baby will recommend the type of ventilation they believe is best for your baby’s clinical condition.

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Reintubation The breathing tube placed in a baby’s windpipe (trachea) may need to be replaced quickly if it becomes blocked with mucus, or if it falls out. Problems like this are usually detected when the baby’s blood oxygen level drops and the baby’s chest does not move in time with the ventilator. Staff may wait and give the baby a chance to breathe on their own before replacing the tube.

Back on a ventilator The first time a baby is taken off a ventilator, they may breathe well for a bit but then become tired. Breathing takes up a lot of energy for a very poorly baby, and can leave them drained. In this case, doctors will replace the ventilator and try again later. Gradually, the periods off the ventilator should increase.

If your baby develops an infection, they may have difficulty breathing and might need to go back on a ventilator until the infection is cleared.

“The team worked on Tabitha for 17 minutes before she was stable but still critical. During this time she was intubated twice. She was linked to lots of machines to monitor breathing, blood pressure, temperature and she was covered in bubble wrap to keep her warm. Tabitha was always lively and forever using her feet to move the bubble wrap” John Blackhall, Tabitha’s brother, born at 24 weeks

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Medical procedures Almost all babies on the unit will need some tests and procedures. The hospital staff are required to ensure that you understand why these procedures are needed throughout your baby’s stay and, wherever possible, you should be aware of what is happening to your baby and be involved in decision making. Many of these tests and procedures can cause short-term mild discomfort, but not long-term risk. Staff will discuss this with you and give you information.

Consent or permission Medical staff have a responsibility to you as a parent to ensure you are clear about what tests and treatment may be given to your baby.

In reality many procedures, such as routine blood tests, are considered ‘low risk’ and don’t carry a risk of harm to your baby. You will not be formally asked for consent for these to be done. Also, if your baby develops a new or unexpected problem that is relatively serious when you are not in the hospital, it may be necessary to begin investigations and treatment before they have a chance to speak to you. In this situation, the doctors or nurses should explain what has been done and why as soon as they can. You should feel free, however, to ask about any test or procedure that may or may not be carried out with or without your consent.

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Pain relief During their time in special care, your baby may require tests and procedures that could cause discomfort or pain. These are only undertaken if absolutely necessary, and there are many ways in which pain and discomfort can be reduced. These include breastfeeding, providing small amounts of expressed milk or sugar, or practising comfort holding (see page 22) during and after a procedure.

Research has also shown that familiar smells like the mother’s breast milk or their parents’ skin can have a calming effect on term and preterm babies during blood collection. You can also assist staff on the unit by describing your baby’s responses (eg, facial expression) to them during a procedure, so they can monitor the baby’s need for pain relief.

If your baby’s pain is more severe or the procedure takes more time, a pain-relieving drug can be given. Your neonatal unit should have a policy on providing pain relief.

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Tubes and wires •

Intravenous (IV) drips Most babies on a neonatal unit have fine tubes (called drips or cannulae) inserted into a tiny blood vessel, usually in a hand, foot, arm or leg.

These are usually either to provide fluid or as a route for giving important medication, such as antibiotics. Very occasionally, these can break the delicate blood vessels, or become blocked. If so, fluids can leak into the surrounding tissues causing swelling. On rare occasions, this may damage the skin leaving a scar.

•

Long lines Long lines are very fine tubes passed into one of the baby’s large veins.

This is a more complex procedure than for inserting drips, and can involve surgery. They are regularly used for giving parenteral nutrition to babies who can’t take all their milk into their stomach (see page 50 for more information), and for giving certain drugs that need to go into a large vein. It isn’t always easy to site the lines in exactly the right place. If they are not correct, they may block or leak. Staff will always watch these carefully and remove them if there are concerns.

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Endotracheal tubes Babies who are ventilated will have an endotracheal tube, which is placed down the windpipe. Sometimes these tubes become blocked or fall out and have to be replaced.

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Feeding tubes Very early babies often can’t feed normally, for a variety of reasons.

Most babies will therefore be fed through special feeding tubes, especially during the first few weeks on the unit. Please see section 5 for information about the ways to feed your premature or sick baby.

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•

Umbilical catheters Catheters are long, soft tubes of different sizes that are inserted into the blood vessels in the belly button. There are two types of umbilical catheters. One is called an umbilical artery catheter, which is inserted into a baby’s artery, and the other is an umbilical venous catheter, and goes into the vein. Most catheters have only one tube through which fluid can be given, but some have a second or third tube so that different fluids and medications can be given through the one entry point. This can allow your baby to have several procedures taking place without being disturbed or distressed. Umbilical catheters are mostly used in the first few days after birth. The line in the artery is mostly used for measuring blood pressure and sampling blood gases; the line in the vein is used for giving nutrition and medicines.

Blood tests and transfusions Blood is much more than a red fluid that carries oxygen around the body. It is full of living cells which can give clues about a baby’s overall health. Blood also acts as the body’s transport system, moving nutrients, waste products and chemical messages around. Blood samples can give lots of information about what is going on inside a baby’s body.

Most samples are taken by pricking the skin to get blood from the back of the hand or the heel. These pricks may leave tiny scars, but do not affect the growth of the hand or foot.

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Sugar levels – Blood needs to contain enough sugar to distribute energy to all the body’s organs. Doctors want to know that the baby is managing to control the amount of sugar in their blood, and may give the baby supplements through one of the intravenous tubes.

Babies born to diabetic mothers or born with a very low birthweight may have problems maintaining blood sugar levels and need extra monitoring.

•

Gases – As well as carrying oxygen from lungs to organs, blood transports carbon dioxide from organs to lungs. Measuring the amount of these gases along with levels of acid can give clues about how well your baby is breathing, as well as indicating whether organs like the kidneys are meeting your baby’s needs.

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Platelets – These fragments in blood play a part in preventing excessive bleeding. They are often reduced in number in premature babies’ blood.

If levels are very low, your baby may need a platelet transfusion.

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Haemoglobin – This is the chemical that blood uses to transport oxygen.

If babies have too few red blood cells and become anaemic, the amount of oxygen carried to the body organs may be below what the baby actually needs. If your baby is anaemic, they may need one or more blood transfusions in the first few weeks.

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White blood cells – These cells play a big role in fighting infections.

Monitoring their numbers helps doctors know how well your baby is overcoming infection.

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Donating blood Special care baby units need a constant supply of freshly donated blood to carry out all the transfusions babies often require. A sick or premature baby can only receive blood that is no more than five days old, unlike adults, who can receive blood up to a month old.

It is obvious how important it is that units receive regular blood donations.

Ask staff on the unit about how you can make a donation, and try and get as many friends and family involved as you can.

Special tests requiring consent From time to time, doctors will need to screen a baby for viral infections and genetic problems, which may have serious health implications for mother or baby. Staff should discuss these tests with you before they are done and gain your consent. If your baby needs a surgical procedure, written consent will be needed and it is usually the surgeon who asks for this.

Eye tests See our factsheet on screening and treatment for retinopathy of prematurity (ROP) for further information.

Premature babies are at increased risk of having problems with their eyes.

If your baby weighed less than 1,500g at birth or was born at less than 32 weeks, an eye specialist (an ophthalmologist) should check for retinopathy of prematurity (ROP). This can be a serious condition and occasionally needs to be treated with laser therapy. Premature babies are also at higher risk of other eye problems, in particular squints and long- or short-sightedness, occasionally needing glasses.

Hearing tests Similarly, premature babies are at slightly greater risk of having hearing problems. As part of a national programme, all babies will have a hearing test before leaving hospital. Consent is usually required for this.

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This looks at the structure of a newborn baby’s brain and can show whether there is any bleeding or other problems. Doctors should always discuss results of any scans they do.

MRI scan Many neonatal units have access to magnetic resonance imaging (MRI) scanners. These can give very useful pictures of the baby’s organs without harming them. If your baby has an MRI scan, they will be moved to be scanned using a special incubator that keeps them safe and warm. In most hospitals, the MRI unit is a distance from the neonatal unit, so the baby may need to be in a stable condition for this investigation to be possible.

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Head ultrasound scan

Immunisations It is standard practice to start routine immunisations eight weeks after birth, even if your baby is still in hospital. You will have an opportunity to talk about this with staff and they will ask for your consent to do this.

Lumbar puncture If there is evidence of a severe infection, doctors may want to investigate and take a sample of fluid that surrounds the spinal cord. This fluid flows down from the brain, so analysing it should show if the infection is present in this vital part of the nervous system.

A nurse will hold the baby in a curled position on their side so that the space between the bones is increased. The nurse will watch the baby closely while a doctor inserts a small needle between two bones low in the baby’s back.

As far as we know, discomfort is only slight and specific pain relief is not usually given.

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Phototherapy for jaundice

What’s happening to our baby?

See our factsheet on neonatal jaundice for further information.

Red blood cells only live in the body for a few days or weeks. They are constantly broken down and new ones are formed. When these cells are broken down, a chemical called bilirubin is released into the blood stream. Sometimes levels of bilirubin build up in the blood of newborn babies because their liver cannot remove it fast enough. This is often the case for premature babies and those with liver problems. However, if bilirubin builds up to very high levels in the blood for the baby’s level of maturity, it can be serious, so levels will be monitored very closely.

Bilirubin is broken down by blue light, so premature babies are often placed under a blue light or laid on top of a biliblanket that gives out similar light. This is called ‘phototherapy’.

If bilirubin levels get too high, doctors may perform an exchange transfusion, replacing the baby’s blood with fresh, bilirubin-free blood.

Continuous Positive Airway Pressure (CPAP) Some babies need a little help with their breathing, but do not need a ventilator. They can be helped with CPAP. This is when air flows through two fine tubes placed in the baby’s nostrils or through a small mask over the baby’s nose. This slightly raises the pressure and helps to keep the baby’s lungs inflated.

If CPAP is used for a long time, the pressure of the nosepiece on the tip of the nose can give the baby a snub-nose appearance. This corrects itself after CPAP is stopped. Occasionally, the CPAP prongs or mask can damage the nose, but staff will be monitoring this. Sometimes breathing support may be given via a tube inserted into only one nostril, and this may enlarge the nostril if used for a long time. This technique is becoming less and less common.

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If your baby is premature and their lungs aren’t fully developed, staff are likely to give them a medicine called surfactant directly into their lungs down the tube in the windpipe. Surfactant is a natural substance produced in the lungs to make breathing easier. It is produced by the body from about 20 weeks gestation, but premature babies often don’t have enough.

Apnoea of prematurity Premature babies often have a pattern of breathing in which there are short pauses. Occasionally, these pauses can be prolonged and the baby needs to be ‘reminded to breathe’ with gentle stimulation. Drugs like caffeine are used to help stabilise the breathing. Sometimes these pauses can be severe enough for the baby to need some short-term assistance. In most cases, this problem gets better once the baby reaches a corrected age of around 34 weeks. Babies coming off ventilators will be fitted with a monitor which will set off an alarm if they pause for too long between two breaths.

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Surfactant

‘Collapsed lung’ and chest drains Air can sometimes leak from damaged air sacs in the lungs, particularly if the baby is being ventilated. Bubbles of air may form in the lung tissues or around the lungs, forming a ‘collapsed lung’ (pneumothorax). Large pockets of air can compress the lungs and make breathing more difficult. In this case, a doctor may pass a small tube through the chest wall to let the air escape.

A local anaesthetic is given when this is done. Often this has to be done as an emergency, so it is likely that the staff will not be able to discuss this with you until afterwards.

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Medical issues

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Chronic Lung Disease

See our free booklets Ventilation and Chronic Lung Disease and Going home on oxygen for further information.

Babies who are ventilated for long periods of time may get Chronic Lung Disease depending on the level of ventilation or oxygen they need or if they develop a chest infection. Staff may call this Bronchopulmonary Dysplasia (BPD) – but it’s the same thing. If a baby has Chronic Lung Disease, their lungs are stiffer than normal and they have to work harder to get air into their lungs.

They may also become more tired during feeds. Babies are said to have Chronic Lung Disease if they are continuously on oxygen when they reach 36 weeks gestation (four weeks before their due date) and their chest x-ray show up a characteristic appearance typical of this condition. They may need additional oxygen support for a while after they go home.

Brain haemorrhage The tiny vessels that are found in abundance in some areas of a developing baby’s brain can sometimes tear, causing some bleeding. These small haemorrhages appear to cause no long-term problems.

Occasionally, the flow of fluid from the brain to the spinal cord becomes blocked by the clots formed by the blood. Doctors will discuss with you what this might mean for your baby.

Larger bleeds (brain haemorrhage is rated from grade 1 to 4, with 4 being the most severe) can occasionally occur, and doctors caring for your baby will monitor this by carrying out regular ultrasound scans.

These larger bleeds are more serious and may limit blood flow to certain areas of the brain meaning that those areas will not receive enough oxygen. The cells in this area will then die and a small, fluid-filled pocket forms there instead, called a ‘cyst’. Exactly how this may affect the baby will depend on where this cyst is. It is important that you ask the doctors to describe to you what they have seen on the scan, as the terminology can vary between units and be confusing.

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Low birthweight babies have regular tests for infection and spend a lot of time, especially in the early days, on strong antibiotics. This is because all the lines and tubes needed to support them provide an easy way in for germs, and also because it’s hard for them to fight infection, as their bodies are not fully prepared for life outside the womb.

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Infections

As a result, infection is a common problem. Not all infections are the same and not all of them are severe, but it is important that everyone follows the policies for infection control. The staff will explain to you how you can handle your baby without exposing them to any such risk.

Heart problems Babies with unusual heart problems may need to be urgently transferred to a cardiac centre or may be looked after in your local neonatal unit, either until they have grown enough for surgery or are stable enough for discharge and followed up in a routine cardiac clinic. Not all babies with heart problems need surgery.

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Patent ductus/patent ductus arteriosus A common problem for very premature babies is caused by a small connection in the heart, between the major blood vessel supplying the lungs and the major vessel supplying blood to the body, remaining open. This connection is open while the baby is in the womb, but should close at birth.

Doctors call it a patent ductus arteriosus. In full-term babies, this normally shuts within hours of birth, but it can remain open in premature babies or reopen if the baby gets an infection.

This is normally spotted by doctors hearing a heart murmur, and it is usually then confirmed with an ultrasound scan. Often a patent duct causes no problems, but it can increase breathing difficulties and make it harder to get a baby off a ventilator. Your baby may be given drugs to help close the connection. On rare occasions, an operation may be needed. Often the patent ductus closes on its own with no treatment.

Making decisions As the baby’s parents, you have a major role to play when critical decisions have to be made about treatments. The doctors and nurses will advise what may be best for your baby, but you should expect to be involved in making important decisions, and the staff will discuss the options with you. This may be difficult in the case of an emergency when doctors may need to start treatment before they’ve had a chance to speak to you.

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Clinical research

4 What’s happening to our baby?

Your baby is receiving advanced medical care because years of research have gone into studying premature babies’ particular problems. This is why increasing numbers of babies, who may not have lived in the past, are now surviving.

Many trials of different treatments have been carried out with the permission of parents involved, and have led to dramatic improvements in the survival rates and quality of life of premature babies.

This research continues to be vitally important and you may well meet people on the unit who are doing new research. In fact, you may be asked if your baby could become involved.

At first, this can seem like a frightening idea. Your baby may be receiving intensive or special care, and now someone is asking to involve them in clinical research. However, all research is checked out thoroughly beforehand by the Research Ethics Committee to ensure that the proposals are based on secure and reasonable information, and that it is unlikely to pose any increased risk over and above standard treatment.

If you decide not to allow your baby to take part, the doctors and nurses will fully understand and continue to give your baby the best care possible.

The most important thing is that you are reasonably sure of your decision and that you have asked all the questions that you want to reach that decision. If you agree, the hospital must give you a consent form to sign. By signing this, you are confirming you have agreed to involve your baby in the research.

You can ask for your baby to leave a trial at any point if you change your mind. Again, this will not affect the quality of care given to your baby.

Bliss is involved with and supports many research projects across the UK. If you are interested in taking part in these studies or learning more, please contact the Bliss Family Support Helpline on 0500 618140.

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Jack

What’s happening to our baby?

4

“A rollercoaster ride”

M

urray and Jack were born at 25 weeks at Edinburgh Royal Infirmary, weighing 830g and 820g. This was the start of what would be a long rollercoaster ride for the twins and their parents, Lynne and Graeme.

Despite photos and warnings from Graeme, nothing could prepare Lynne for when she finally saw her babies. “As I was wheeled into the unit, it was as if nothing else existed around me except those monitors, alarms, tubes and wires all over their tiny bodies. I was absolutely petrified.”

Over the next 104 days, Lynne and Graeme watched on as Murray and Jack braved a barrage of procedures - countless blood tests, brain scans for suspected haemorrhage, phototherapy, ventilation, eye surgery…

“The staff always took time to explain every procedure”,

Murray

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Lynne recalls. “Telling us what it was for, what the results might mean, what to expect. They kept us fully up to date and never seemed too busy, despite their phenomenal workload, to answer our questions and prepare us for the next steps”.

Lynne and Graeme were actively encouraged to participate in the twins’ cares.

“This opportunity to be parents rather than observers gave us so much confidence and helped us bond with the boys”, says Lynne.

“And, after four long weeks, I finally got to hold Murray. That brief cuddle made me feel like a real mummy for the first time.”

Before leaving the unit, Jack underwent laser eye surgery for retinopathy of prematurity.

The hospital was trialling a new procedure for eye tests and his parents were happy for Jack to be involved. He is now seeing the world as every four year old should. “We participated in other studies too”, says Lynne. “With all the support we received, we were only too happy to give a little in return”.

5 Feeding Information about feeding

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Breastfeeding and expressing milk

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Feeding

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Information about feeding In the womb, your baby will have been supplied with nutrients and fluid via the placenta and umbilical cord. When a baby is born prematurely, they will need to receive these nutrients in a combination of the following ways, depending on their maturity and health.

Parenteral nutrition (PN) Placing a long, fine tube into a vein in the arm or leg means that mixtures of nutrients can be delivered directly into a baby’s blood stream. Initially the mixture may contain glucose, salts and water, with aminoacids, fats, vitamins and minerals being added in due course.

PN is particularly useful for babies who are very poorly or whose stomach and gut are not developed enough to digest food.

Tube feeding When babies are more stable and can tolerate it, they can start to take food into their stomachs. Very premature babies can’t coordinate all of the muscles needed for sucking and swallowing milk, so a tube is passed through their nose (a naso-gastric tube), or their mouth (an oral-gastric tube), into their stomachs.

It is important for your baby to practise sucking at the same time as receiving a tube feed. This can be done by using a dummy or, after you have expressed milk, by putting your baby to the breast and encouraging them to lick and suck at the breast. Some units will discourage the use of dummies once your baby is able to begin breastfeeding, and in general dummy use and breastfeeding at the same time may not be helpful.

Research shows that this sucking practice can help feeding development by building an association between sucking and having a full stomach.

When you are ready, you may be able to help tube feed your baby if you wish.

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5

See our free booklet Breastfeeding your premature baby for further information.

The fact that your baby is in a neonatal unit will have come as an enormous shock to you. However, the good news is that you can still do many of the things you planned, including breastfeeding. Even if you decide against breastfeeding, you could express your breast milk for a little while. Giving this to your baby will help to protect them from many different illnesses.

Feeding

Breastfeeding and expressing breast milk

As with all newborn babies, some find breastfeeding easier than others.

This can depend on factors such as the baby’s age, maturity and their medical condition. As a result, it can take up to a few weeks to establish breastfeeding.

A mother’s breast milk is uniquely important for your baby’s growth and development. You should begin expressing your milk as soon as possible after the birth, and the milk can be stored on the unit until your baby is ready to feed. Most units will provide breast pumps, sterilisers and bottles, as well as a private, quiet place for you to express your milk. The nurses and midwives are there to guide and support you and your partner with expressing milk.

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Feeding

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Some hospitals also have a milk bank to provide carefully screened, donated breast milk for babies whose mothers cannot supply their own, for example because of illness.

Providing breast milk may also help you to feel closer to your baby. But you must feel happy with whatever you decide to do.

Advantages of breast milk Breast milk boosts a baby’s defences against infections and protects them against gastroenteritis and other serious infections, as well as against chest infections.

Mother’s milk also provides nutrients, growth factors and hormones that help your baby grow and develop during the vital early months after birth.

Breast milk is also very easy to digest, is absorbed more easily than formula milk, and helps promote healthy gut activity.

First milk The first milk mothers produce is called colostrum. This is thicker and more yellow in colour than breast milk, and contains a lot of infection-fighting proteins and cells.

You may find it easier to express colostrum by hand than to use a breast pump. Even if your baby is not going to be fed for some time, the colostrum can be frozen until your baby is ready to have it.

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It may be necessary to supplement colostrum in the early days with donor breast milk or formula milk to ensure that your baby receives enough energy and fluid to get well quickly. Don’t worry, you will always be consulted about this and it is just a temporary measure, since you will soon be able to produce enough milk for all your baby’s needs.

5 Feeding

Supplemented feeds

Fortification Your milk is produced to meet a baby’s dietary needs, but the needs of some premature babies can be different. Some very premature babies grow more quickly if they get extra protein, minerals and vitamins. If so, you may need to add fortifiers to your expressed milk. These fortifiers are only used until your baby is strong enough to breastfeed.

Breastfeeding and drug use Whilst almost all drugs and chemicals are passed from a mother’s blood to breast milk, it can be safe to breastfeed if you are still taking drugs, depending on what you are taking and how much. It is recommended that you tell the staff looking after your baby which drugs you are taking so they can advise you about use of your breast milk. Don’t stop expressing, as this will maintain your flow and your milk may very well be safe to use later.

Infection in mothers/maternal infection Infections in the mother, such as HIV or Hepatitis C status, also need to be taken into account in relation to breastfeeding. It is best to discuss concerns you might have about this with staff on the unit, so that you can make an informed choice about breastfeeding. If you would like to discuss this with someone outside of the neonatal unit, confidentially and anonymously, call the Bliss Family Support Helpline on 0500 618140. Alternatively, there are several organisations that you can call for free for support and advice. Please see the useful organisations listed in Section 10.

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Feeding

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Bottle feeding If you or your baby are unable to breastfeed or if you choose not to, you can bottle feed instead. Your baby will have to be mature enough to coordinate sucking with swallowing and breathing before they can feed effectively from the bottle. If they are having trouble, different positions, teats and bottles may help. Staff on the unit should be able to give you support and advice.

“Breastfeeding was very positive.

I expressed from the first day and although my milk threatened to dry up a number of times, I was adamant I would breastfeed like I did my first son. Kwame had a naso-gastric tube, which was put in to make feeding him my expressed breast milk easier. I used to breastfeed once a day, and other times he was tube fed.

He didn’t feed from the breast until about four months old. I was constantly encouraged by the nurses. They were amazing!”

Hyacinth Meyers, mother of Kwame, born at 23 weeks

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6 Saying goodbye to your baby Palliative care

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Facing intensive care decisions

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Bereavement

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Saying goodbye to your baby

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Palliative care Despite advances in care and technology, there are some babies for whom a cure is not possible. Doctors and nurses might talk to you about ‘palliative care’. This is the care babies and their families receive when the baby is recognised as having a life-threatening, life-limiting or a chronic condition.

Sometimes these conditions can be identified before birth, other times after periods of treatment and investigations.

This kind of care focuses on improving the quality of life and reducing pain, and includes end of life and bereavement care.

You and your baby should expect care that helps you find the right information at the right time; receive the care you want in the place you want – at home, in hospital, or in other places such as a children’s hospice; and access emotional, spiritual, psychological and practical support.

ACT is a UK wide charity working to achieve the best possible quality of life and care for every child and young person who is not expected to reach adulthood. It can offer advice and support as you make decisions about your child’s care. Visit www.act.org.uk or call the Helpline on 0845 108 2201.

Facing intensive care decisions See our free booklet on intensive care decision-making for further information.

Making the decision to limit or stop your baby’s intensive care is devastating, and very few parents feel emotionally prepared to deal with this. You may disagree with the medical staff or even with your partner about it. You may feel that you are just not ready to make that decision.

Take your time and talk to the nurses, doctors and other support staff around you; with their experience and knowledge in these matters, they can be invaluable at such a crucial time. All information and advice will be given with your baby’s best interests at heart. Your unit will have a psychotherapist or counsellor on site to help you and there should also be spiritual support available, should you wish.

In the weeks that follow, you may doubt or regret the steps that you had to take. At this very difficult time, it may be helpful to talk to your GP, bereavement counsellor or other professional supporter, as well as the Bliss Family Support Team and parent volunteers.

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Bereavement Watching your baby fight for life can be very traumatic and all parents worry that their baby may not win the battle. The thought of any baby dying is tragic, and it seems particularly cruel when the baby is so young.

Caring from the start Many parents who have been through this experience have talked about not wanting to get too attached to their baby because they are afraid that their baby will not survive. Research has shown that those who did get involved in their baby’s care, even though their baby eventually died, say that knowing they had done all they could while their baby was alive helped them to come to terms with the loss of their baby later.

For most people, getting involved does not involve a choice – it happens automatically. Even seeing your baby on the ultrasound scan may have stimulated thoughts of them being part of your family, and being attached to your baby is very normal.

Saying goodbye to your baby

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In the long term, it is likely to be helpful to know that you did all you could to show your baby your love and care. It may also reduce some of the inevitable feelings of guilt that may crop up in the future.

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Saying goodbye to your baby

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If your baby dies The neonatal unit will have a room where you can be alone with your baby if your baby dies. Staff may ask you if you would like to wash and dress your baby.

Parents choose to keep reminders of their baby’s life in different ways. Most units will take a photo of the baby with the parents’ permission, for parents to bring home with them or take away at a later date. Parents may also be given a memento card with a foot or hand print and a lock of hair. Some parents keep the baby’s name tag and bonnet in recognition of the fact that, for a very important time, this baby was part of the family and always will be.

Making arrangements Practice varies in each hospital, but in most you should be able to stay with your baby for as long as you like and you can take your baby home with you after the death certificate has been issued. Many have multi-faith prayer rooms or chaplaincies with people who are there to offer their support if or when you need it.

Staff in the hospital can give you any guidance you need, or put you in touch with members of any local faith community, should you wish to involve them in preparing a funeral. The hospital may also help you with the funeral.

If you would like, the staff on the unit should also be able to put you in touch with local counsellors or support organisations that can help you during and after this understandably difficult time.

For information about bereavement support, please see the useful organisations listed on in Section 10.

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7 Older children Your baby’s brothers and sisters

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Visitor policies

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Older children

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Your baby’s brothers and sisters Having a brother or sister in neonatal care can be very hard on older children in the family. They probably know that their parents are struggling, but are often not old enough to be able to understand what is going on, or how to do anything helpful. Take time to explain to any older children what is happening.

During this time, they need the reassurance that, even though you are busy looking after the new baby, you still love them and they are still as important as ever. The arrival of a new brother or sister can trigger jealousy, particularly when a new baby is demanding so much of both parents’ time and attention.

It is good to involve children as much as possible, either by taking them to the hospital on some visits, where this is possible, or by encouraging them to make cards and paintings that can be taken in to hang near to their baby brother or sister’s incubator.

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7 Older children

“She was like a doll”

W

hen Rosie Joy was born early at 27 weeks, her two older brothers Niall and Archie were 11 and four years old. With mum in the hospital with the new baby and dad looking after them, the boys were looked after by their grand-parents, sometimes for a few days at a time.

“I remember the first night mum was away, when Rosie was born,” says Niall, who is now 14. “I was really anxious about mum and the baby being OK. Archie was really little, he didn’t really understand what was going on. He was very sad the first night, so I tried to tell him it was going to be alright.”

Niall and Archie went to the same school at the time. Until then, they squabbled together a lot. But when mum and dad became busy with the new baby, they stopped. “I tried to look after Archie,” says Niall. “At school, I used to try and put it all at the back of my mind. But I could see Archie was a lot quieter and didn’t talk to his friends so much.”

Niall and Archie didn’t get to see their baby sister until she was two and a half weeks old. An outbreak

of chickenpox meant that children were not allowed on the unit over that period, to prevent the infection spreading. Everyone else in the family had seen Rosie by then.

“When I first saw her, I was shocked. I didn’t realise she’d be that small – sort of like a doll,” says Niall.

Mum Suzanne says: “The boys reacted very differently to the situation. Niall seemed to ‘grow up’ overnight, looking after his younger brother, while Archie went back to baby mode as soon as I got home.”

Today, Archie and Niall are back to squabbling as they used to. Rosie is three years old and thriving. For Rosie’s first birthday, the family held a party raising funds for the unit that had looked after Rosie. Niall donated his pocket money.

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Visitor policies There are no set visiting times and you may visit any time of the day and night.

Some hospitals have quiet times and staff will inform you about this.

Some hospitals allow brothers and sisters to visit, but others do not because of the risk that they could bring childhood illnesses onto the ward. If you can, it’s important to bring your older children along to the unit. Relatives and friends can visit, but generally only two people should be around the incubator or cot at any time. Check with the nursing staff as there may be occasions when this is not possible.

For security reasons, neonatal units now have a security camera, bell and security lock at the main entrance.

Check before taking children into the unit to see when the quiet times are.

Many hospitals have a play area for children not far from the neonatal unit.

In some hospitals, these are supervised by hospital staff. Also remember that children become bored very quickly so encourage them to bring in quiet things to do.

Don’t bring anyone in if you know that they have an infectious virus, such as a heavy cold or chickenpox. They should make sure they wash their hands well before they come in and use the hand gel provided on the unit frequently, especially before touching your baby.

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8 Home time Going home

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Home oxygen

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Respiratory syncytial virus (RSV)

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Checking your baby’s health

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Home time

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Going home Please see the free Bliss booklet Going home – the next big step and the Bliss Going Home Pack for more information.

Preparing to bring your baby home can cause great anxiety as well as relief.

Over the weeks or months that you and your baby have been on the unit, you may have grown used to a high level of support and always having people around to answer questions and give advice. At home you will be much more on your own, but you will still have access to support and advice from a range of health professionals.

But remember, your baby is only coming home because staff on the unit believe that they are well enough to leave the hospital and you are capable of looking after them.

There are health services available to help you. A health visitor should be able to give support, along with your local GP. Many pharmacists can also help with issues that may crop up from time to time. Some areas of Britain have specialised neonatal outreach teams or community based paediatric homecare teams who can also provide specialist support. Make sure you know about all the services that are available in your area before you leave the hospital.

Bliss is also with you all the way, to support and advise you through the next big step for your baby and your family. The free Bliss Going Home Pack, available in all units, contains a selection of our publications aimed at providing you with some helpful information for caring for your baby at home.

This includes useful advice on breastfeeding, weaning, financial matters and support for fathers.

Inside the pack, you will also find a few extra benefits and treats to enjoy, including vouchers and special offers on exciting products. Make sure that you pick up your copy before you leave the unit.

“After 10 weeks on the unit, we were itching to get our twins home.

Everything was ready for them. We would wait every morning for the doctor’s round to ask if that day would be the day. Eventually, on 30 January, we took them home. It was so exciting. I had watched so many mothers let through the doors of the maternity unit with their baby. Now it was our turn. We were so happy.”

Louisa Hill, mother of Isobel and Imogen, born at 28 weeks

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It is important to start preparing for your baby to come home in advance.

There is a lot of to do, especially if your baby was born prematurely and you were not able to get everything ready before the birth.

It may be hard to believe that the day your baby will be well enough to come home will ever come when they are so small and sick.

But the weeks do go by, and it could be hard to fit in visits to the hospital, looking after the family and keeping things running smoothly at home, as well as getting ready for the baby’s home-coming.

8 Home time

Preparing for leaving the hospital

If you can get organised in plenty of time, you will be able to spend more time with your baby when they are establishing feeding and need you with them for longer periods. This will also give you more time to share concerns or practical difficulties you may have with staff on the unit.

Once your baby is stable enough to no longer need the specialist help in the unit, staff will ensure that you can provide all aspects of your baby’s care.

Staff should give you training in how to perform basic resuscitation and give guidance on ‘safe-sleeping’. This is a really useful life skill for all parents. For more information, see our DVD Basic life support for babies – a guide for parents and our leaflet, written with the Foundation for the Study of Infant Deaths (FSID), Back to sleep.

Some neonatal units have facilities where you can ‘room in’ for one or two nights and practice caring for your baby on your own, but with staff nearby if you need them. Rooming in can help you build up confidence and realise that you really can care for your baby.

Travelling home For your baby’s safety, you must always use a suitable car seat, even on the shortest of journeys. If you do not own a car, it is still advisable to borrow or hire a baby seat for getting your baby home from hospital by car or taxi.

As with all babies, never hold them in a car. For advice on car seats and transporting your baby home, speak to staff on the unit and they will suggest the best options.

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Home time

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Before you leave Check that you have contact phone numbers of people you can call if you need additional advice. You can contact the neonatal unit at any time if you have questions while you are getting settled in at home. Make sure that you are clear about: • • • • • •

any medication your baby needs and how to get hold of this how to measure medication for specific doses (for example, syringing out 3ml) when to give your baby medication (for example, before or after feeding) the importance of sterilising equipment how to make milk feeds if your baby is bottle fed or adding fortifiers if your baby is breastfed.

Temperature By the time your baby comes home, they should be able to maintain a body temperature just as well as any full-term baby. However, if your baby is very small, they may still need a warmer environment. Staff on the unit will advise you, if this is the case.

The best room temperature for your baby is around 18ºC (65ºF). Too hot or too cold could be dangerous. This is much cooler than the unit, but that temperature was needed because many of the babies in it were not sufficiently mature to maintain their body temperature. Do not worry if your home feels cooler than the hospital. It is helpful to have a room thermometer at home, as well as a digital thermometer to check your baby’s temperature if you are concerned.

In winter you may keep the baby’s room a little warmer than the rest of the house. The main risk could be if you make the room too hot rather than let it get too cold.

If the baby seems hot and moist, remove a layer of clothing or a blanket or sheet. If it appears that your baby has a fever, contact your GP and get advice.

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Home oxygen See our free booklet Going home on oxygen for more information.

A number of babies who need extra help with breathing will go home on oxygen. This means that the baby needs to have a supply of oxygen to support their breathing, and the need may continue for several months or longer. If this happens, you will be supported by a neonatologist and a nursing team in preparing to go home. Once you are home, your baby will be closely monitored to ensure they are progressing well and receiving the right amount of oxygen. You will be told about your baby’s needs and how to tell if your baby needs more oxygen before you leave the unit.

Home time

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Staff will arrange a meeting with you before your baby goes home so that you can discuss the future and ask any questions. If there is a community outreach worker attached to the neonatal unit, it is likely that they will coordinate the discharge and provide you with all the information you need about preparing your home and other practicalities. Some units offer the opportunity to room in and learn how to look after your baby on oxygen therapy. This will give you the confidence to continue this care at home. If this option is not available, staff on the unit will ensure that you have been shown and understand all you need to know.

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Home time

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Respiratory syncytial virus (RSV) See our free booklets Common Winter Illnesses and RSV for more information.

RSV affects a large proportion of all babies and causes cold-like symptoms.

RSV can cause breathing difficulties if the lungs are affected. If your baby was born prematurely, is prone to getting lung infections or was born with a congenital heart problem, they could be at greater risk of being made more seriously ill if infected with RSV. Hygiene is very important in managing RSV. Always wash your hands and keep surfaces, toys and bedding clean. Reduce your baby’s exposure to busy public areas and people who may have a cough or cold. RSV season peaks between October and March.

While there is not yet a vaccine available, there is a monthly antibody injection which could help protect your baby against severe RSV infection. Talk to staff on your unit to discuss what might be best for your baby.

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Checking your baby’s health

Home time

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Signs that you may notice if your baby is becoming unwell may include: • • • • • • • •

change in feeding – usually becoming disinterested and reluctant to feed vomiting – when this has not been a particular problem before change in stools – more frequent, loose, watery, ‘explosive’ than usual being less aware of you, not as responsive to you as usual, waking up less readily seeming to be more floppy than usual breathing more rapidly, noisily, or with long pauses between some breaths appearing paler than usual, with colder hands or feet blotchy skin, rash that doesn’t become much lighter when a glass tumbler is pressed against it – this is possibly serious and you should get medical help urgently.

Whenever any of these problems develop, you should have your doctor see your baby. If your doctor is unavailable, you should take your baby to the nearest hospital emergency department.

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Home time

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Long-term medical problems Some babies may have problems that continue for some months or years.

Babies who have spent a long time on a ventilator or breathing support can often become wheezy when they get a cold or virus that affects their chests.

Others may experience learning or movement difficulties later in life. Make sure care staff at nurseries, teachers and any health professionals are fully aware that your child had a premature birth or special needs after birth.

This information will help them make a more accurate assessment of any problems.

Close follow-up on health and development are very important in the first two years of life.

These checks will help to rectify any problems and give you the opportunity to discuss your baby’s progress with a paediatrician.

You will also be contacted by your health visitor for your baby’s two year review. If at any time, however, you are at all worried about your child’s health, growth or development you should speak to your health visitor or doctor.

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9 About Bliss Bliss

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How you can help

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About Bliss

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Bliss Throughout the UK, 80,000 babies are born prematurely or sick every year.

The critical care that these babies receive in the first hours, days and weeks has a direct impact on their health and wellbeing for the rest of their lives.

Our mission is to make sure that more babies born prematurely or sick in the UK survive and that each one has the best quality of life.

Bliss was established in 1979 and is the only UK charity dedicated to working for special care babies and their families.

We aim to achieve our mission through our three main areas of activity.

Supporting families Having a premature or sick baby is often a frightening and overwhelming experience. Bliss provides a range of free advice, support and information to families, helping them to understand what is happening to their baby and offering a way for parents to talk to others who know what they are going through.

Our Family Support Team offers: • • • • • • •

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a Freephone Helpline providing information and support Parents 4 Parents – a service to put people in touch with other parents who have gone through a similar experience a text messaging information, advice and support service a comprehensive website containing information and useful contacts, as well as an interactive parent messageboard a wide selection of free information, both in print and online. The Bliss Parent Information Guide is also available in Polish, Urdu, Portuguese and Bengali a network of local support groups access to qualified counsellors.

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About Bliss

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Funding research and training Neonatal medicine is full of constant changes and breakthroughs. Bliss supports new developments in care by funding vital clinical research and providing study days for health professionals to improve their skills, as well as helping the spread of good practice throughout the sector.

Campaigning for better care The care premature and sick babies receive in the first few days and weeks after birth plays a key role in shaping their future lives. Bliss fights for the needs of the most vulnerable babies and their families to be met. We want the best standards of care to be available, regardless of when and where a baby is born.

“I want to say thank you to Bliss – I rang the Helpline in floods of tears a few days ago. It had been a hard week with hospital visits and no sleep. Bliss listened to me and my worries, and it really helped. I had my lovely daughter 19 months ago at 25 weeks and she is great, nearly walking and just loving life. I just wanted to share the fact that sometimes on this journey your emotions can take you by surprise. I felt a bit abandoned and lost at the time, and Bliss was there for me long after the birth, and they rescued me.”

Vanessa Lett, mother to Evie, born at 25 weeks

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How you can help Without the support of our donors and volunteers, we would not be able to make a difference to the lives of babies born too soon, too small or too sick.

There are many ways that you could help: •

• • • • • • •

set up a regular donation by visiting our secure site at www.bliss.org.uk/donate or calling our Fundraising coordinator on 020 7378 5740. Alternatively, you can send us a cheque made payable to Bliss to: 9 Holyrood Street, London, SE1 2EL. be a volunteer on our Parents 4 Parents network or our Helpline, offering your advice and experience to help other parents with babies in special care. become a case study for Bliss by telling your story for use in the media. celebrate your baby pulling through the tough times by opening a Sunshine Fund to raise money for Bliss remember a loved one you have lost by setting up a Precious Star Fund and raising money for us in their name. include Bliss in your will and leave a lasting legacy for the next generation. donate your time and skills and volunteer for Bliss. There are a range of opportunities available. join our one to one nursing campaign to tackle the shortage of specialist neonatal nurses. Visit www.121nursing.org.uk to have your say.

If you would like to support us in other ways, whether through your company or by selling items on eBay, call us on 020 7378 5740 or visit www.bliss.org.uk to find out more.

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10 More information and support Useful organisations and groups

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Further reading

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More information and support

More information and support

Useful organisations and groups Antenatal information Action on Pre-eclampsia (APEC) Information and support services.

Helpline 020 8427 4217 www.apec.org.uk Antenatal Results and Choices (ARC) Information and support during and after antenatal testing.

Helpline 020 7631 0285 t 020 7631 0280 www.arc-uk.org National Childbirth Trust (NCT) Antenatal support and breastfeeding advice.

Enquiries 0300 33 00 770 Breastfeeding helpline 0300 33 00 771 www.nct.org.uk

Bereavement Child Bereavement Charity Leaflets, books and videos for the bereaved. t 01494 446 648 www.childbereavement.org.uk Cruse Bereavement Care Promotes the wellbeing of bereaved people.

Helpline 0844 477 9400 Young person’s helpline 0808 808 1677 www.crusebereavementcare.org.uk Young person’s website www.rd4u.org.uk

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SANDS (Stillbirth and Neonatal Death Society) Telephone support and groups for bereaved families.

Helpline 020 7436 5881 e helpline@uk-sands.org www.uk-sands.org

Breastfeeding equipment and support and other practical items Angelcare Produces a range of sound and movement monitors as well as nappy disposal systems. t 0845 009 1789 www.angelcare-uk.co.uk Cuski baby comforter Produces a range of baby comforters. t 01829 771 825 e info@cuski.co.uk www.cuski.com La Leche League Breastfeeding help and information.

Helpline 0845 120 2918 www.laleche.org.uk Medela UK Ltd Produces a range of breast pumps and other breastfeeding accessories. t 0870 950 5994 www.medela.co.uk

Pampers Produces specialist micro and premature nappies. t 0800 328 3281 www.pampers.co.uk UNICEF UK Baby Friendly Initiative Leaflets, information and research about breastfeeding. t 0844 801 2414 www.babyfriendly.org.uk

Counselling, support and advice The Association for Postnatal Illness Helpline 020 7386 0868 www.apni.org Birth Trauma Association Offers support to all women who have had a traumatic birth experience. www.birthtraumaassociation.org.uk Bliss Counselling Service Aims to help you find a counsellor trained in the issue surrounding prematurity. t 0500 618 410 www.bliss.org.uk British Association of Counselling and Psychotherapy (BACP) Provides a search facility to help you find a local counsellor or therapist. t 01455 883 316 www.bacp.co.uk

Cry-sis Support for families with excessively crying, sleepless and demanding babies.

Helpline 08451 228 669 www.cry-sis.org.uk Dad Talk A place where fathers can share ideas and find information. www.dadtalk.co.uk Fatherhood Instistute Information on fatherhood and dad-friendly services. t 0845 634 1328 www.fatherhoodinstitute.org

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Mothercare Produces a range of baby products including premature clothing. Available in store and online. t 08453 304070 www.mothercare.com

Foundation for the Study of Infant Deaths (FSID) Information on infant health, baby care and sudden infant deaths.

Helpline 0808 802 6868 www.fsid.org.uk Gingerbread Information and support to lone parents through a network of local groups.

Helpline 0808 802 0925 www.gingerbread.org.uk Home-Start Support for families with young children.

Freephone 0800 068 6368 www.home-start.org.uk NHS Pregnancy Smoking Helpline Helpline 0800 169 9 169 www.smokefree.nhs.uk Parentline Plus Offers support to anyone parenting a child.

Helpline 0808 800 2222 www.parentlineplus.org.uk

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More information and support

10

Patients Association Campaigns to improve healthcare services and provides advice on dealing with problems or complaints.

Helpline 0845 608 4455 e helpline@patients-association.com

Cerebra Foundation for brain-injured children and young people. t 01267 244 200 Helpline 0800 328 1159 www.cerebra.org.uk

Relate Offers advice, relationship counselling, and support face to face, by phone and online. www.relate.org.uk

Cleft Lip and Palate Association Information and support. t 020 7833 4883 www.clapa.com

Samaritans Confidential counselling service. t 0845 790 9090 e jo@samaritans.org www.samaritans.org.uk Tiny Life Northern Ireland’s premature and vulnerable baby charity. t 028 9081 5050 www.tinylife.org.uk

Disability and medical problems Brain and Spine Foundation Information on neurological disorders.

Helpline 0808 808 1000 www.brainandspine.org.uk British Heart Foundation Helpline 0300 330 3311 www.bhf.org.uk British Lung Foundation Support and advice as well as a network of Breathe Easy support groups.

Helpline 0845 850 5020 www.lunguk.org

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Down’s Heart Group Support and information relating to heart conditions associated with Down’s Syndrome. t 0844 288 4800 www.dhg.org.uk Down’s Syndrome Association Provide information and support to help people with Down’s syndrome, their families and carers. t 0845 230 0372 www.downs-syndrome.org.uk Newlife Help and care for sick and disabled babies, children and their families. t 01543 462 777 Nurse services 0800 902 0095 www.newlifecharity.co.uk NHS Direct Health information and self care advice. t 0845 4647 www.nhsdirect.nhs.uk SCOPE Support for cerebral palsy and related disabilities. t 0808 800 3333 www.scope.org.uk

Travel and car safety

Citizens Advice Provides advice and information and details for your local bureau. www.citizensadvice.org.uk

British Insurance Brokers Association Insurance advice and products. t 0870 950 1790 www.biba.org.uk

Directgov Information and factsheets about benefits and other money topics. www.direct.gov.uk

Child Accident Prevention Trust (CAPT) t 020 7608 3828 www.capt.org.uk

Family Fund Financial help for families of disabled and seriously ill children, under the age of 16. t 0845 130 4542 Textphone 01904 658 085 www.familyfundtrust.org.uk National Debtline Free, confidential and independent advice about debt problems.

Helpline 0808 808 4000 www.nationaldebtline.co.uk Tax Credits Helpline Provides advice to families on tax credits. t 0845 300 3900 www.hmrc.gov.uk Turn2us To access benefits and grants. t 0808 802 2000 www.turn2us.org.uk Working Families Information and details on employment rights, childcare and flexible working. t 020 7253 7243 www.workingfamilies.org.uk

Royal Society for the Prevention of Accidents (RoSPA) Gives advice on purchasing, fitting and using car seats for children. t 0121 248 2000 www.rospa.co.uk

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Benefits and financial advice

Vitalair Information about where to get oxygen supplies when travelling abroad. t 0800 136 603 www.vitalair.co.uk

Multiple births Mutliple Births Foundation For information and support. t 020 8383 3519 www.multiplebirths.org.uk Twins and Mutliple Births Association (TAMBA) Helping parents to meet the challenges that multiple birth families face.

Twinline 0800 138 0509 www.tamba.org.uk

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Further reading

More information and support

Coping with your premature baby Dr P Stanway, 1999 This book is about having a premature baby in the UK. Easy to read and matter-of-fact guide.

Recommended by parents.

ISBN 0-7528-15962 Breastfeeding special care babies S Land, 2002 Practical book comprehensively covering details of breastfeeding special care babies, including positioning and milk supply.

ISBN 0-7020-2544-5 Infant massage: A handbook for loving parents V McClure, 2000 Written by founder of the International Association of Infant Massage, this book explains practical massage techniques and the wider benefits.

ISBN 0-5533-8056-7 Your premature baby 0–5 years N Bradford, 2000 Accessible language demystifying the unfamiliar medical terms of the SCBU, with hints and quotes from experienced parents.

ISBN 0-7112-16142 The twins handbook E Friedrich and C Rowland, 1998 Covers most aspects of twins, pregnancy, births, coping, development, starting school, special needs and bereavement.

ISBN 0-8605-12673

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Sent before my time M Cohen, 2003 A child psychotherapist’s view of life on a neonatal intensive care unit.

ISBN 1-85575-910-1 When a baby dies N Kohner and A Henley, 2001 Emotional and factual aspects of losing a baby through miscarriage, stillbirth or neonatal death. Parents’ stories, medical examinations, subsequent pregnancies.

ISBN 0-415-252768 Twins and multiple births: The essential parenting guide from pregnancy to adulthood.

C Cooper, 2004 An enlightening guide, by a practising GP and mother of twins.

ISBN 0-0918-9485-9 Your premature baby and child A Tracy and D Maroney, 1999 A tool for parents to guide them as they cope with the complex medical issues and long term problems associated with prematurity.

ISBN 0-4251-6506-X The premature baby book: Everything you need to know about your premature baby from birth to age one M Sears, R Sears and J Sears, 2004 Offers easy to digest information and advice for parents coping with a premature baby.

ISBN 0-3167-3822-0

Index Breastfeeding: 51

Establishing breastfeeding:

23, 51 Breast pumps: 51, 52 Breathing: 69 Bronchopulmonary Dysplasia: 44 Brothers: 60 Caesarean section: 20 Car seats: 65 Cardiac compression: 6 Case studies: 29, 48, 61 Chest drains: 43 Children: 60 Chronic Lung Disease: 33, 44 Clots: 44 Collapsed lung: 43 Colostrum: 16, 52 Consent: 12, 35, 40, 47 Comfort holding: 16, 22, 27, 36 Continuous Positive Airway Pressure (CPAP): 42 Counsellor: 9, 11, 15 Dads: 26 Death: 57, 58 Decisions: 45, 56 Dieticians: 11 Disinfection: 9 Doctor’s round: 10 Donations

Blood donations: 40

Donations to Bliss: 74 Drugs: 5, 36, 37, 43, 46, 53 Emotional support: 9, 15 Endotracheal tube: 37 Equipment: 17, 20, 32

Bliss 2010 – Parent Information Guide

More information and support

Age

Corrected: 6

Uncorrected: 6 Alarms: 17

Apnoea alarms: 43 Alcohol dependency: 46 Apnoea of prematurity: 43 Asking questions: 25 Audiology technician: 11 Bathing: 24 Benefits: 28, 30 Bereavement: 56, 57 Bilirubin: 42 Birthweight: 3

Low: 3

Very low: 3

Extremely low: 3 Bliss : 72

Campaigns: 73

Donating: 74

Family Support services: 72

Funding research: 73

Publications: 84, 85

Support groups: 15

Volunteering: 74 Blood tests: 38 Blood transfusions: 38 Blotchy skin: 69 Bonding: 21, 22, 23, 27 Bottle feeding: 54 Brain haemorrhage: 44 Breast milk: 16, 51

Donated breast milk: 52

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82

Expressing milk: 16, 51 Eyes: 18

Eye tests: 40 Faith: 11, 56 Feeding: 24, 50

Bottle feeding: 54 Feeding tubes: 37, 50 First impressions: 14 Financial advice: 30 Floppy: 68 Formula: 53 Fortification: 53 Full term: 3 Further reading: 81 Gases: 39 Gastroenteritis: 52 Going home: 64 Going home pack: 64 Growth chart: 6 Haemoglobin: 39 Haemorrhage: 44 Head shape: 19 Health visitor: 6, 64 Health checks: 69 Hearing tests: 40 Heart problems: 45 High dependency: 8 Home oxygen: 43, 67 Hygeine: 9, 62, 68 Immunisation: 41 Incubator: 22, 32 Infection: 2, 4, 6, 22, 34, 39, 40, 41,

45, 46, 52, 68 Infection in mothers: 53 Intensive care: 8, 56 Intravenous drips: 37 Jaundice: 42 Kangaroo Care: 16, 21, 23, 27 Lanugo: 18 Bliss 2010 – Parent Information Guide

Liver: 42 Long lines: 37 Low dependency: 8 Lumbar puncture: 41 Lungs: 33, 44 Making decisions: 45 Medication: 66 Monitors

Oxygen saturation: 33

Vital signs: 33 MRI scan: 41 Nappy changing: 16, 24 Neonatal abstinence syndrome: 46 Neonatal intensive care unit: 2, 8, 11 Neonatal staff: 11 Neonatologist: 11 Noise: 20 Normal appearance: 18 Nurses: 12 Ophthalmologist: 11 Outreach worker: 64, 67 Oxygen: 33, 67 Paediatric consultant: 11 Pain relief: 22, 36 Palliative care: 56 Parenteral nutrition: 37, 50 ‘Parents 4 Parents’: 15, 28 Patent ductus: 46 Paternity leave: 27 Permission: 36, 47 Pharmacists: 11, 64 Photos: 20, 58 Phototherapy: 42 Physiotherapists: 11 Platelets: 39 Pneumothorax: 43 Pre-eclampsia: 4

Touch: 20, 21 Trachea: 34 Transferring: 9 Transitional care: 8 Travelling: 65 Triplets: 4 Tube feeding: 50 Tubes: 33, 37 Twins: 4 Ultrasound scans: 2, 41 Umbilical catheters: 38 Useful organisations: 76 Ventilation: 33

Continuous Positive Airway

Pressure (CPAP): 35 Ventilator: 33

Positive pressure: 33

High frequency: 33 Vernix: 24 Visitor policies: 62 Volunteering: 74 Vomiting: 69 Washing: 16, 24 Weight gain: 23 White blood cells: 39 Windpipe: 34

Bliss 2010 – Parent Information Guide

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Premature 3

Moderately 3

Very: 3

Extremely 3 Procedures: 25, 35 Psychological support: 9, 15 Psychotherapist: 9, 11, 15, 56 Quiet times: 10 Radiological technician: 11 Rash: 69 Records: 12 Red blood cells: 42 Reintubation: 34 Religious support: 9 Research: 12, 47 Retinopathy of prematurity: 40 Resuscitation: 6

Bliss resuscitation DVD: 65 Rights

Your rights: 12

Your baby’s rights: 12 Room in: 67 Respiratory syncytial virus (RSV): 68 Senior House officers: 11 Siblings: 60 Sisters: 60 Skin: 18, 69 Special care baby unit: 8 Specialist registrar: 11 Staff on the unit: 10, 11 Sucking: 50 Sugar levels: 39 Supplemented feeds: 53 Support at home: 64 Support groups: 15, 72 Surfactant: 43 Temperature: 32, 66 Term: 3

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Bliss Parent Information Guide translations

More information and support

The Bliss Parent Information Guide is available in the following languages: English, Polish and Portuguese (printed version and download); Bengali and Urdu (download only). Bliss Scotland has also produced a Scotland specific edition.

If you would like a copy of one of these guides, please visit www.bliss.org.uk or call the Family Support Helpline on 0500 618140. All publications are free to families of a premature or sick baby.

Bliss is also a member of Language Line, the telephone interpreting service, which has access to over 170 languages.

Bengali evsjv fvlvq (ïaygvÎ WvDb‡jvW K‡i) GB wb‡`©wkKv PvB‡j, AbyMÖn K‡i www.bliss.org.uk I‡qemvB‡U hvb| wbw`©ó mg‡qi Av‡M Rb¥ jvfKvix wkï (wcÖg¨vPzi †eex) ev Amy¯’ wkï‡`i cwievi cÖKvwkZ mKj cÖKvi Z_¨ webvg~‡j¨ cv‡eb| Portuguese Se pretender uma cópia deste guia em português (em suporte impresso ou como download), visite www.bliss.org.uk. Todas as publicações são gratuitas para famílias com um bebé prematuro ou doente.

Polish W celu otrzymania niniejszej ksiąeczki w języku polskim (w wersji drukowanej lub w wersji do pobrania), należy odwiedzić stronę pod adresem www.bliss. org.uk. Wszystkie publikacje sąbezpłatne dla rodzin wcześniaków i dla rodzin chorych dzieci.

Urdu

‫�اگرآپ کو اس گائیڈ کی ایک نقل اردو میں چاہیے(صرف ڈائون لوڈ) تو براہ کرم‬ ‫ قبل از وقت پیدا یا بیماربچےکےخاندانوں‬-‫ سے رجوع کریں‬www.bliss.org.uk -‫کیلئےمتام مطبوعات مفت ہیں‬

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Bliss 2010 – Parent Information Guide

Other Bliss publications •

Bliss general leaflet

•

Breastfeeding your premature baby

•

Comfort holding poster

•

Common winter illnesses

•

Facts for fathers

•

Financial advice for families

•

Going home – the next big step

•

Going home on oxygen

•

Going home pack

•

Kangaroo Care poster

•

Little bliss magazine**

•

Look at me – I’m talking to you!*

•

Parent Information Guide

•

Resuscitation DVD - Basic life support for babies

•

RSV (Respiratory Syncytial Virus)*

•

The next pregnancy*

•

Ventilation and Chronic Lung Disease – your questions answered*

•

Weaning your premature baby

•

Young parents’ information guide

*download only **subscription only For publications: order online at www.bliss.org.uk or call 020 7378 1122 All publications are free to parents of a premature or sick baby.

Bliss, 9 Holyrood Street, London SE1 2EL t 020 7378 1122 f 020 7403 0673 e enquiries@bliss.org.uk Bliss parent messageboard: visit www.bliss.org.uk and follow the link.

Family Support Helpline: Freephone 0500 618140 RNID typetalk: 018001 0500 618140

Family Support Helpline Freephone 0500 618140 RNID typetalk 018001 0500 618140 Bliss is a member of Language Line, the telephone interpreting service, which has access to qualified interpreters in 170 languages.

Bliss relies on voluntary donations to fund its services and your support would really make a difference.

To find out how to donate, please contact 020 7378 5740 or visit our website www.bliss.org.uk

Registered charity no. 1002973 Scottish registered charity SCO40878

www.bliss.org.uk