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see more videos " Family Integrated Care In the NICU, infants are physically separated from their parents and this often has an impact on the physical, psychological, emotional health of both the parents and the infants. Family Centered Care is an approach to planning and delivery of health

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A stay in neonatal care - An animated guide

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Welcome Parents!

We encourage you to learn as much as you can about caring for your child in the NICU.

Parent education sessions and learning from your bedside nurse are excellent ways to become familiar and comfortable with your new role. We have also provided general information here, to help get you started. If you would like more information or need clarification, please consult a member of your child's healthcare team.

Thank you to our content partners:

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Welcome Parents! We encourage you to learn as much as you can about caring for your child in the NICU. Parent education sessions and learning from your bedside nurse are excellent ways to become familiar and comfortable with your new role. We have also provided general information

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Information for your first few days in the neonatal unit. Read about what to expect, finding your feet, and how to get more support.

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Why is your baby being transferred?

Your baby may need to be transferred to another hospital for a number of different reasons. The most common reason is that your baby requires a higher level of care than their local hospital is able to provide. Neonatal units are described as providing different levels of care ranging from level 1 to level 3, with Level 3 providing care for the most unwell babies. An extremely preterm baby, for example, will need to be cared for in a level 3 unit. This map provides information on different units and their level. The hospitals highlighted in red are the Northwest level 3 neonatal units and those in blue are the level 1-2 units.

On some occasions your baby may need to be moved because they have been born with/developed a heart condition or surgical condition that requires surgery or specialist review. In the North West our surgical and cardiac centres are based at Alder Hey Children's Hospital in Liverpool and St Mary's Hospital in Manchester. These hospitals are highlighted in green on the map.

Alternatively, your baby may also be transferred to a hospital closer to your home for continuation of care after they have got better. They may also need taking to outpatient appointments before they are ready for discharge.

The Consultant at your local hospital should inform you why your baby is being transferred.

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Why is your baby being transferred? - Connect NW

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Why is your baby being transferred? Your baby may need to be transferred to another hospital for a number of different reasons. The most common reason is that your baby requires a higher level of care than their local hospital is able to provide.

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Neonatal care resources - Baby Friendly Initiative

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These resources cover a range of issues around caring for sick and preterm babies on neonatal units.

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Mid Cheshire Hospitals NHS Foundation Trust

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The Neonatal Unit (NNU) at Leighton Hospital provides Intensive, High Dependency and Special Care for babies across South Cheshire and the surrounding district. Primarily the NNU cares for premature babies but also accepts full term babies with medical conditions. The NNU has 3 Intensive Care, 4 High Dependency and 8 Special Care cots.

Parents have 24 hour access to their baby and can see their baby at any time of day or night.

Mission Statement

Our aim is to provide excellent and individualised care that consistently places the baby and their family at the heart of all we do.

Philosophy of Care

Neonatal care is based on creating caring relationships in a secure, welcoming environment. We pride ourselves on having high levels of sensitivity, empathy and respect for individuals, their wishes and cultures. With this as our foundation, we promise:

To provide the optimum care and treatment for all babies based on the most up to date research and resources in partnership with families, the multidisciplinary team and the wider Northwest Neonatal Network.

To encourage and support the developing relationship between families and baby, providing information and guidance in order for families to be fully integrated into the NNU care team.

To deliver holistic care through the utilisation of an expert multidisciplinary team, that considers the baby and family as a whole.

To update and expand our knowledge in all areas relating to the medical, nursing and therapeutic care of neonates, promoting evidence based practice and lifelong learning, in order to always provide the best care for babies and their families.

To create an atmosphere of friendliness and reassurance, honesty and support; recognising that this is an unexpected journey for the baby and their family.

To foster and promote a family and baby-centred developmentally supporting and nurturing environment, that offers sensitive neuroprotective care; minimising stress and pain and protecting sleep. We recognise that this environment in partnership with the parent-baby relationship, is key to future development and wellbeing, and helps provide the best possible outcomes for the baby and their family.

Visiting

Parents can have access to the NNU at any time to visit their baby/babies.
Due to COVID restrictions, please check with the NNU staff for up to date visiting guidance
Conditions

The NNU at Leighton is part of the Northwest Neonatal Operational Delivery Network. This website has lots of information for parents. For example information about all the Neonatal Units in the Northwest to links for parent support.

NeoMates - Access via Facebook for peer support if you have a baby on the Neonatal Unit.

Bliss (www.bliss.org.uk/contact) - Bliss offers emotional and practical support to empower families of babies born premature or sick and equip them with the knowledge and skills they need to provide the best possible care to their baby.

Catch App (Common Approach to Children's Health) - is a free NHS health app for parents of children from pregnancy to age 5 with information about common conditions.

Lactation Consultant is available for help and advice with breast feeding.

Frenulotomy service available via referral from a health care professional

The NNU has a partnership arrangement with Hope House to support babies and families with long term conditions. The Ray of Hope is a charity that raises funds for our maternity and neonatal unit by knitting, sewing and card making. The funds raised go towards improving and purchasing items for both areas E.g. heated cots and breast pumps. Contact Chris Cooper on 01270 582187 at chris@rayofhope.co.uk

How to access the service

Babies who require additional care at birth or shortly following birth will be assessed by a Paediatrician and transferred to the NNU.

Contact

How to find us

You can find us by entering the hospital's Maternity entrance, following the pink corridor and following signs for Ward 22.

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Neonatal Unit (Ward 22) :: Mid Cheshire Hospitals NHS Foundation Trust

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The Neonatal Unit (NNU) at Leighton Hospital provides Intensive, High Dependency and Special Care for babies across South Cheshire and the surrounding district. Primarily the NNU cares for premature babies but also accepts full term babies with medical conditions. The NNU has 3 Intensive Care, 4 High Dependency and 8 Special Care cots.

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Take a virtual tour of our neonatal unit!

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vCreate is a free Secure Video Messaging service that allows clinical staff to record and send video updates to parents with children in Neonatal and Paediatric Units.

Parents access videos of their child when they are away from the unit to receive reassurance of their child's wellbeing and minimise any separation anxiety. It's safe, secure and available on any device.

NHS Trusted Application

Unit staff record short video updates of the child for their parents to watch when away from the Unit. These are recorded on any device with a camera i.e. mobile phone / tablet.

The videos are stored securely on the vCreate platform. Parents register for an account which is then approved by the Unit staff. Once approved, Unit staff assign videos to the appropriate parent account.

Parents login to watch their child's videos at any time and are alerted when new videos are available. A secure video diary builds up over time which the parents have access to 24 hours per day, on any device. The Unit can see when the videos are being watched for auditing purposes.

Unit staff record videos when they have time and not at a prescribed rate. This process will have no impact on their clinical duties and the videos do not contain any sensitive clinical information.

If the child is transferred to a new Unit, the account and videos move with them. When the child leaves the Unit, parents are able to download their child's videos to keep. At this point the Unit delete the videos and remove the account for Data Protection purposes.

Request a Demo

Secure Video Technology for Healthcare

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How Secure Video Messaging Technology Works

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See how the vCreate Secure Video Messaging service works for both Units and parents

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Children must normally use a child car seat until they're 12 years old or 135 centimetres tall, whichever comes first.

Children over 12 or more than 135cm tall must wear a seat belt.

You can choose a child car seat based on your child's height or weight.

Height-based seats

Height-based seats are known as 'i-Size' seats. They must be rear-facing until your child is over 15 months old. Your child can use a forward-facing child car seat when they're over 15 months old.

You must check the seat to make sure it's suitable for the height of your child.

Only EU-approved height-based child car seats can be used in the UK. These have a label showing a capital 'E' in a circle and 'R129'.

Weight-based seats

The seat your child can use (and the way they must be restrained in it) depends on their weight.

Only EU-approved weight-based child car seats can be used in the UK. These have a label showing a capital 'E' in a circle and 'ECE R44'.

You may be able to choose from more than one type of seat in the group for your child's weight.

0kg to 10kg

0

Lie-flat or 'lateral' baby carrier, rear-facing baby carrier, or rear-facing baby seat using a harness

0kg to 13kg

0+

Rear-facing baby carrier or rear-facing baby seat using a harness

9kg to 18kg

1

Rear- or forward-facing baby seat using a harness or safety shield

15kg to 25kg

2

Rear- or forward-facing child car seat (high-backed booster seat or booster cushion) using a seat belt, harness or safety shield

22kg to 36kg

3

Rear- or forward-facing child car seat (high-backed booster seat or booster cushion) using a seat belt, harness or safety shield

Manufacturers can now only make booster cushions approved as group 3. This won't affect any existing booster cushions in group 2 and you'll still be able to use them.

Fitting a child car seat

You must only use a child car seat if your car's seat belt has a diagonal strap, unless the seat is either:

specifically designed for use with a lap seat belt

fitted using ISOFIX anchor points

You must also:

deactivate any front airbags before fitting a rear-facing baby seat in a front seat

not fit a child car seat in side-facing seats

Children with disabilities or medical conditions

The same rules apply for children with disabilities or medical conditions, but they can use a disabled person's seat belt or a child restraint designed for their needs.

A doctor can issue an exemption certificate if a child is unable to use a restraint or seat belt because of their condition.

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The rules for child car seats and booster seats - height, weight, age, type of vehicle, car, minibus, licensed taxi

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This information is available in verified by experts in our Editorial Board including representatives from Royal College of Midwives, Royal College of Paediatrics and Child Health and Royal College of Psychiatrists as well as other key health organisations in the UK. To download Baby Buddy, visit the relevant app store of your choice:

Introduction

The first video from the Small Wonders DVD explains the different levels of care your baby might need, and who might give it. We meet some of the families and hospital staff, and guide you as to how to use this DVD to get support, wherever you are on your journey.

In the second video from the Small Wonders DVD, we meet three families, two who had time to prepare for life in a neonatal unit and one who had very little warning. We see three births, one of which is the birth of triplets, and we follow the babies being prepared for transfer to the neonatal unit.

First hours

The third video from the Small Wonders DVD provides a look into the first hours and days in the neonatal unit and shows you how you, as a parent, can play a very important role in your baby's care.

Expressing breast milk

The fourth video from the Small Wonders DVD shows how mothers can express breast milk for their baby within a few hours of giving birth (if at all possible mothers should express milk within the first 6 hours after giving birth). Starting to express breast milk early and expressing milk often will help your body produce plenty of milk for the weeks and months to come.

Holding your baby

The fifth video from the Small Wonders DVD shows how skin-to-skin contact (also known as 'kangaroo care') can help both you and your baby. You will see families move from being nervous to being able to hold their babies with confidence.

Your time in hospital

The sixth video from the Small Wonders DVD follows families as they begin to feel more confident in caring for their babies on the neonatal unit. You will also see how some of our families cope with their baby's condition getting worse.

Feeding independently

The seventh video from the Small Wonders DVD follows four families as they learn to help their babies feed independently of tubes. Although some babies may go home being fed by tube, most will be feeding independently before they are discharged from hospital, whether they are breastfeeding or formula-feeding.

Preparing for home

The eighth video from the Small Wonders DVD covers what to expect when your baby is ready to leave hospital. We follow five families as they prepare to go home.

First months at home

The ninth video from the Small Wonders DVD follows nine families enjoying the early weeks and months at home with their pre-term baby. They all have different experiences and challenges.

Twins and triplets

The tenth video from the Small Wonders DVD follows four families who had twins or triplets and discovers some some of the joys and challenges that come with having more than one baby.

Bereavement

This video from the Small Wonders DVD is only for families who have to deal with bereavement. We have included it because parents asked us to. Only watch this video if you feel it will be helpful to you and please be aware that everyone's experience of bereavement is different and may not reflect your own. This film follows the journeys of families who lost babies during filming and chose to carry on sharing their experiences to help others.

The twelfth and final video from the Small Wonders DVD shows the families whose journeys we have been following in films 1 to 10 looking back on their experiences and sharing their thoughts and feelings.

Latest

The Impact Lead will focus on developing Best Beginnings' frameworks for monitoring and evaluating our national and international work ensuring that learning continues to be captured in ways that can be shared and used for effective advocacy and influencing. The successful candidate will also play a pivotal role influencing policy and its implementation within the maternity, early years, digital health and public health context.

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The Small Wonders videos have been designed to help you on your journey with your sick or premature baby.

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Our Transport Equipment

Your baby will be transferred in a specialist transport incubator. Our incubators are equipped with all the necessary equipment to provide the appropriate level of care which your baby needs. Our incubators are able to provide mobile intensive care and are equipped for all eventualities and emergency situations.

The incubator is able to keep your baby warm and allows our team to observe your baby closely throughout the transfer. The incubator is designed to lock securely into the ambulance and the team will also use soft Velcro safety harnesses in the incubator, to secure your baby safely in the incubator for the journey.

The Incubator will have a cover over it to maintain your baby's privacy and prevent them from being startled by any bright lights! A small teddy bear or blanket can accompany your baby in their transport incubator if you would like.

Throughout their journey in the ambulance your baby will be continuously monitored. Your baby will be accompanied in the back of the ambulance by a Nurse; and when required, a Doctor or Advanced Neonatal Nurse Practitioner (ANNP).

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Our Transport Equipment Your baby will be transferred in a specialist transport incubator. Our incubators are equipped with all the necessary equipment to provide the appropriate level of care which your baby needs. Our incubators are able to provide mobile intensive care and are equipped for all eventualities and emergency situations.

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Find your local unit

Hospitals often have a unit or ward dedicated to caring for babies who require additional support after birth, which cannot be provided on the Maternity wards.

These are often referred to in different ways such as the Special Care Baby Unit (SCBU), Neonatal Unit (NNU) or Neonatal Intensive Care Unit (NICU)

Latest News

For the latest news, please follow us on

NWNODN working in close collaboration with

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North West Neonatal Operational Delivery Network

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Find your local unit Hospitals often have a unit or ward dedicated to caring for babies who require additional support after birth, which cannot be provided on the Maternity wards.

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Find out what happens during labour and birth.

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Neonatal care in hospital

Special care for babies is sometimes provided on the ordinary postnatal ward and sometimes in a specialist newborn (neonatal) area.

Having a baby in neonatal care can be worrying, but the staff looking after your baby should make sure you receive all the information, communication and support you need.

Not all hospitals provide specialist neonatal services, so your baby may be transferred to another hospital if they need special care.

Why babies need special care

Your baby could be admitted to neonatal care for a number of reasons, including when they:

are born early (premature)

are very small and have a low birthweight

have an infection

have jaundice

had a very difficult birth

are waiting for, or recovering from, complex surgery

Touching and holding your baby

The special care baby unit may seem strange and confusing at first, especially if your baby is in an incubator or on a breathing machine. There may also be tubes and wires attached to their face and body.

Ask the nurse to explain what everything is for and show you how you can be involved in your baby's care. You may be able to change your baby's nappy, wash them and change their clothing.

Once your baby's stable, you'll be able to hold them. The nurses will be able to help you take your baby out of the incubator and show you how to have skin-to-skin contact.

Your baby will benefit greatly from physical contact with you. You can talk to your baby as well - this can help both of you.

You should wash your hands carefully and dry them thoroughly before touching your baby.

Feeding

To begin with, your baby may be too small or too sick to feed themselves. You can express some of your breast milk, which can be given to your baby through a tube.

A fine tube is passed through their nose or mouth into the stomach. This will not hurt them.

Talk to a midwife at the hospital about how you can express breast milk for your baby. The hospital may have breast pumps you can use.

Your milk has particular benefits, especially if your baby is sick or premature, as it's enriched with proteins (such as antibodies), fats and minerals.

If your baby is not able to have your milk to begin with, the milk can be frozen and given to them when they're ready.

When you go home, you can express milk for the nurses to give while you're away. There's no need to worry about how much milk you produce - every bit helps your baby.

Incubators

Babies who are very small are nursed in incubators rather than cots to keep them warm. You can still have a lot of contact with your baby.

Some incubators have open tops, but if your baby's incubator does not, you can put your hands through the holes in the side of the incubator to stroke and touch them.

Newborn babies with jaundice

Jaundice in newborn babies is common because their livers are not fully developed. Jaundice will make their skin and the whites of their eyes look a bit yellow.

Babies with severe jaundice may be treated with light therapy (phototherapy). The baby is undressed and put under a very bright light, usually with soft eye pads or a special box over their head to protect their eyes.

The special light helps break down the chemical that causes jaundice. It may be possible for your baby to have phototherapy by your bed in the postnatal ward so you do not have to be separated.

Light treatment may continue for several days, with breaks for feeds, before the jaundice clears up. Sometimes, if the jaundice gets worse, your baby may need a blood transfusion. This is not common.

Some babies have jaundice because of liver disease and need different treatment. A blood test that checks for liver disease is done before phototherapy is started.

Find out more about how newborn jaundice is treated.

Babies with jaundice after 2 weeks

Many babies are jaundiced for up to 2 weeks after they're born, or 3 weeks in premature babies.

It's more common in breastfed babies and does no harm. It is not a reason to stop breastfeeding.

It's important to see your doctor within a day or 2 if your baby is still jaundiced after 2 weeks, especially if their poo is chalky white. This can indicate a liver problem.

A blood test will distinguish between jaundice that'll go away by itself, or jaundice that may need urgent treatment.

Babies with disabilities

If your baby is disabled, talk to people about how you feel, as well as about your baby's health and future.

Your GP, a doctor for newborn babies (neonatologist), a children's doctor (paediatrician) or your health visitor can all help you.

You can also contact the hospital Patient Advice and Liaison Service (PALS) or your social services department (through your local authority on GOV.UK) for information about local organisations that may be able to help.

The organisations listed here can offer help and advice:

Talking to other parents with similar experiences can often help.

Worries and explanations

Hospital staff should explain what kind of treatment your baby is being given and why. If they do not tell you, ask them.

It's important that you understand what's happening so you can work together to make sure your baby gets the best possible care.

Some treatments need your consent to go ahead, and the doctors will discuss this with you.

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

The consultant neonatologist or paediatrician should arrange to see you, but you can also ask for an appointment at any time if you wish.

The hospital social worker may be able to help with practical issues, such as travel costs or help with looking after children.

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Find out about the special care given to babies born early (prematurely) or those who are sick, jaundiced or born with a disability.

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This page contains information that you or parents you know may find useful. Please feel free to share, download and use the content on this page.

Infant crying is normal and it will stop! Babies start to cry more frequently from around 2 weeks of age. Click on this LINK to read more about infant crying.

Comfort methods can sometimes soothe the baby and the crying will stop. Is the baby hungry, tired or in need of a nappy change? Click on this LINK to download some comfort techniques.

It's okay to walk away if you have checked the baby is safe and the crying is getting to you. After a few minutes when you are feeling calm, go back and check on the baby.

Never, ever shake or hurt a baby. It can cause lasting brain damage and death.

Looking for more advice? Download our infographics.

Please note that some may find this video distressing. Viewer discretion is advised

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This page contains information that you or parents you know may find useful. Please feel free to share, download and use the content on this page. Infant crying is normal and it will stop! Babies start to cry more frequently from around 2 weeks of age.

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All babies cry, and some more than others. Crying is your baby's way of telling you they need comfort and care.
Sometimes it's easy to work out what they want, and sometimes it's not.

The most common reasons for crying are:

hunger

a dirty or wet nappy

tiredness

wanting a cuddle

wind

being too hot or too cold

boredom

overstimulation

There may be times of the day when your baby tends to cry a lot and cannot be comforted. Early evening is the most common time for this to happen.

This can be hard for you, as it's often the time when you're most tired and least able to cope.

The amount babies cry tends to peak when they're around 4 to 8 weeks old, then gradually tail off.

How to calm a crying baby

Try some of the following ways to comfort your baby. Some may work better than others:

If you're breastfeeding, let your baby suckle at your breast.

Having some gentle noise in the background may help distract your baby.

Some older babies like to use a bit of cloth or a blanket as a comforter.

Hold your baby or put them in a sling so they're close to you. Move about gently, sway and dance, talk to them and sing.

Rock your baby backwards and forwards in the pram, or go out for a walk or a drive. But limit how long your baby sleeps in a car seat to up to 30 minutes for newborns and up to 2 hours for babies. Even if they wake up again when you stop, at least you'll have had a break.

Find something for them to listen to or look at. This could be music on the radio, a CD, a rattle, or a mobile above the cot.

Try stroking your baby's back firmly and rhythmically, holding them against you or lying face downwards on your lap.

Undress your baby and massage them gently and firmly. Avoid using any oils or lotions until your baby's at least a month old. Talk soothingly as you do it and keep the room warm enough. Some health centres and clinics run baby massage courses. For information, ask your midwife or health visitor.

Try a warm bath. This calms some babies instantly, but makes others cry even more.

Sometimes too much rocking and singing can keep your baby awake. You might find lying them down after a feed will help.

Ask your health visitor for advice.

Crying during feeds

Some babies cry and seem unsettled around the time of a feed. If you're breastfeeding, you may find that improving your baby's positioning and attachment helps them settle.

You can go to a breastfeeding drop-in group and ask for help if there's one available in your local area.

The Breastfeeding Network's website can provide information on the nearest group to you.

You can also ask your health visitor for advice.

Crying during feeds can sometimes be a symptom of reflux, a common condition where babies bring back milk after feeds.

Speak to your health visitor or GP for more information and advice.

If your baby cries constantly

There are several reasons that can cause a baby to cry excessively.

It can be exhausting if you have tried everything and nothing seems to comfort your baby.

Colic

Excessive crying could be a sign that your baby has colic. Everyone agrees that colic exists, but nobody knows what causes it.

Some doctors think it's a kind of stomach cramp. The crying sounds miserable and distressed, and stops for a moment or two, then starts up again, which suggests it could be caused by waves of stomach pain.

The crying can go on for some hours. There may be little you can do except try to comfort your baby and wait for the crying to pass.
Get tips for coping with colic
Crying and illness

If your baby's crying constantly and you cannot console or distract them, or the cry does not sound like their normal cry, it can be a sign they're ill.

Or they may be ill if they're crying and have other symptoms, such as a high temperature. If this is the case, contact your health visitor, GP or call NHS 111.

Call 999 and ask for an ambulance if your baby:

has a fit (seizure or convulsion)

has blue, mottled, ashen (grey) or very pale skin

is unresponsive, floppy or not waking up as easily as usual

breathes rapidly or makes a throaty noise while breathing, or seems to be working hard to breathe, perhaps sucking in their stomach under their ribcage

is being violently sick a lot (projectile vomiting)

has a high temperature, but their hands and feet feel cold

has a spotty purple-red rash anywhere on the body - this could be a sign of meningitis

Find out the signs of serious illness in your baby
Trust your instincts. You know what's different or worrying behaviour in your baby.

Getting help with a crying baby

You can talk to a friend, your health visitor or GP, or contact the Cry-sis helpline free on 0800 448 0737. It is open 9am to 10pm, 7 days a week.

Cry-sis can put you in touch with other parents who have been in the same situation.

You can also visit the Cry-sis website for information on coping with crying babies.

If you decide to talk to your health visitor or GP, it can help to keep a record of how often and when your baby cries.

For example, this might be after every feed or during the evening. This can help your health visitor or GP to work out if there's a particular cause for the crying.

Keeping a record can also help you identify the times when you need extra support. You could think about possible changes to your routine.

There may be times when you're so tired and angry you feel like you cannot take any more. This happens to a lot of parents, so do not be ashamed to ask for help.

If you do not have anyone who can take care of your baby for a short time and the crying is making you stressed, put your baby in their cot or pram, make sure they're safe, close the door, go into another room and try to calm yourself down.

Set a time limit - for example, 10 minutes - then go back.

Never shake your baby

No matter how frustrated you feel, you must never shake your baby. Shaking moves their head violently and can cause brain damage.

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A crying baby can be exhausting and it can be hard to know what they need, especially in the early days. Use these tips to help soothe them.

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Public Health England ( PHE) created this information on behalf of the NHS. In this information, the word 'we' refers to the NHS service that provides screening.

This leaflet is for parents of babies who are in a special care baby unit, neonatal intensive care unit or paediatric intensive care unit.

We understand this is likely to be a stressful time for you and your family. This information will help you and your health professionals to talk through how newborn screening tests fit into all the other parts of your baby's care. This information should support, but not replace, discussions you have with health professionals.

It explains some important differences in the way newborn screening tests are carried out for babies in special care baby units. It is important you also read the Screening tests for you and your baby booklet that you received during your pregnancy. This explains all the screening tests offered for newborn babies.

The screening tests covered here should ideally be completed before you take your baby home.

If your baby was born very prematurely, born before 28 weeks, you may need to wait a few weeks for some tests. Newborn hearing screening testing can only happen once a baby reaches 34 weeks corrected age.

Corrected age is the number of weeks after becoming pregnant, rather than the number of weeks after birth.

For example, a baby born after 28 weeks of pregnancy would need to wait 6 weeks after birth to have their newborn hearing screening test.

Your baby's health care team will be able to answer any questions you might have.

It is your choice whether or not to have any of the tests described in this booklet.

The NHS Screening Programmes use your personal information to ensure you are invited for screening at the right time. PHE also uses your information to ensure you receive high quality care. You can find out more about how your information is used and protected, and your options.

1. Eyes, heart, hips and testes (physical examination)

1.1 The purpose of the screening test

All babies should be offered a newborn physical examination after birth. This includes examination of the eyes, heart, hips and testes (in boys).

1.2 How the test is different

The newborn physical examination screening tests will not be done until your baby is well enough. If you choose to have this screening test, the examination should take place before your baby goes home.

You will be offered a further examination when your baby is 6 to 8 weeks of age, as some conditions can become apparent later.

2. Blood spot

2.1 The purpose of the screening test

The test is to find out if your baby has any of 9 rare but serious health conditions. These are:

sickle cell disease (SCD)

cystic fibrosis (CF)

congenital hypothyroidism (CHT)

6 inherited metabolic diseases (IMDs):

phenylketonuria (PKU)

medium-chain acyl-CoA dehydrogenase deficiency (MCADD)

maple syrup urine disease (MSUD)

isovaleric acidaemia (IVA)

glutaric aciduria type 1 (GA1)

homocystinuria (pyridoxine unresponsive) (HCU)

Early treatment can improve your baby's health and prevent severe disability or even death. If you or a family member already has one of these conditions, please tell your baby's health care team straight away.

2.2 Why screening is different for babies in special care units

The blood spot sample is usually taken when a baby is 5 days old. However, the timing is different when a baby is ill and in a special care baby unit.

2.3 How the test is different

The blood spot sample needs to be taken as soon as possible after your baby is born to screen for SCD. This is in case your baby needs a blood transfusion - the test for SCD would be inaccurate if a sample for screening is taken after a transfusion.

Another blood spot sample to screen for the other conditions will then be taken when your baby is 5 days old. If your baby has a transfusion, this test might be delayed until they are 8 days old.

If your baby is born before 32 weeks of pregnancy, another sample should be taken to test for CHT. This should happen when your baby is 28 days old or when you take your baby home, whichever comes first.

2.4 Getting my results

You should receive your baby's results by letter or from your health visitor within 6 weeks.

3. Hearing loss

3.1 The purpose of the screening test

To find babies who have a permanent hearing loss so that support and advice can be offered right from the start.

3.2 Why screening is different for babies in special care units

1 to 2 babies in every 1,000 are born with a permanent hearing loss in one or both ears. This number increases to about 1 in every 100 babies who have spent at least 48 hours in a special care unit.

Your baby will need to be at least 34 weeks corrected age before having their hearing screening test. The test can be carried out up to 3 months of age and should be done when treatment is complete and your baby is well enough.

Your baby's health care team will advise the most appropriate time for your baby's test to take place.

3.3 How the test is different

If your baby has been in a special care baby unit for more than 48 hours, they will need to have 2 types of hearing screening tests.

These are an AOAE (automated otoacoustic emission) test and an AABR (automated auditory brainstem response) test.

If the test results do not show a clear response, an appointment will be made with a hearing specialist in the audiology department. About 9 babies in every 100 cared for in a special care unit for more than 48 hours do not show a clear response to the screening tests. It is very important that you attend the appointment in case your baby has a hearing loss.

Finding out about hearing loss early gives babies a better chance of developing language, speech and communication skills.

Screening does not pick up all types of hearing loss, so it is important to check your child's hearing as they grow up. If you have any concerns about your child's hearing, you should tell your health visitor or GP.

4. Infectious diseases

4.1 The purpose of the screening test

During pregnancy, we offer and recommend women a blood test to screen for infectious diseases like hepatitis B, HIV (human immunodeficiency virus) and syphilis.

Premature babies born to mothers who have tested positive for hepatitis B will need special monitoring and care.

4.2 How follow-on care is different

Babies born weighing less than 1500g need immunoglobulin (antibodies that fight infection) and the hepatitis B vaccination.

It is very important premature babies have all 6 recommended hepatitis B vaccinations at the right age. Very premature babies (born before 28 weeks) may need their breathing monitored for 2 to 3 days after their first vaccination.

Vaccinations should take place:

within 24 hours at birth (and immunoglobulin)

at 4 weeks of age

at 8, 12 and 16 weeks of age (part of routine childhood immunisation schedule)

at one year of age

Babies also need to have a blood test at their final vaccination at one year to check if infection has been avoided.

5. More information

Details of organisations that can provide support for parents when their baby needs special care are available on NHS.UK.

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Screening tests for you and your baby: babies in special care units

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Public Health England ( PHE) created this information on behalf of the NHS. In this information, the word 'we' refers to the NHS service that provides screening. This leaflet is for parents of babies who are in a special care baby unit, neonatal intensive care unit or paediatric intensive care unit.

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you think you or your child have missed any vaccinations

you or your child have a vaccination appointment - but you've missed it or cannot attend

Your GP surgery can book or rearrange an appointment.

It's best to have vaccines on time, but you can still catch up on most vaccines if you miss them.

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A full list of the routine vaccinations offered on the NHS and when they should be given.

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Some eligible babies may need the BCG (TB) vaccine

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Sleep and night time resources - Baby Friendly Initiative

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These resources by UNICEF UK and other organisations cover a range of issues around infant sleep and caring for babies at night.

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The safest cot is a clear cot

The safest cot for a baby is a clear cot. That means removing anything that isn't essential. Babies need just two items in their cot:

It's important to remove anything that isn't essential because items such as toys, blankets and bumpers could cover their face and obstruct their breathing.

When preparing your baby's sleep space, remember:

No pillows or duvets

No cot bumpers

No soft toys or comforters

No weighted or bulky bedding

No products designed to keep your baby in one sleeping position, such as wedges or straps

No pods or nests, rolled up towels or anything soft placed on top of the mattress.

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Safer sleep overview - The Lullaby Trust

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An easy guide to practicing safer sleep for your baby and reducing the risk of sudden infant death syndrome (SIDS, or cot death).

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Feeding your baby on the neonatal unit can be different to what you had planned, but you can still find the best way of feeding for you and your baby. Find out more here.

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Bottle feeding resources - Baby Friendly Initiative

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These resources cover a range of issues around bottle feeding, including making up feeds and responsive bottle feeding.

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Relationship building resources - Baby Friendly Initiative

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These resources cover a range of issues around supporting close and loving relationships between parents and babies.

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How to Give Baby CPR - First Aid Training - St John Ambulance

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What to do if Your Baby is Choking - First Aid Training - St John Ambulance

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Please feel free to ask a member of staff for a feedback form prior to discharge!
All feedback is appreciated!

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News About us Get involved Run For Us Picnic Meet with your MP to ask for Neonatal Leave Now How to Fundraise You give | we do Subscribe to our newsletter Who We Are Our Mission After NICU: A post pandemic report 2021 Prem Aware Award Your premature child at

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Bliss Champions

Bliss Champions provide a vital link between parents, neonatal units and Bliss services, to ensure that families can gain access to the information and support services that we provide.

Bliss aims to ensure that all families with a baby on a neonatal unit for more than 24 hours have access to our resources and support.

Independent Family Groups

Independent Family Groups are run by a mixture of parents and health professionals in the community.

These groups can provide emotional support and information to families of premature or sick babies.
Please note: Bliss lists information about Independent Family Groups across the UK however we are not responsible for running these groups.
Anyone can also access peer support through the Bliss and Netmums forum

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Bliss Champions provide a vital link between parents, neonatal units and Bliss services, to ensure that families can gain access to the information and support services that we provide. Bliss aims to ensure that all families with a baby on a neonatal unit for more than 24 hours have access to our resources and support.

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Spoons Neonatal Family Support | Facebook

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A closed peer support group for parents of babies experiencing neonatal care. A Neonatal peer support group set up by parents for parents. Check out our other links: SPOONS Dads (private support...

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Welcome to the Netmums Forum for parents of premature and sick babies. Chat to other parents for support and advice in caring for babies born premature or sick, from the early trials of time in the NICU, to concerns about milestones and development. Please note, as a peer-to-peer support board, Netmums has not checked the qualifications of anyone posting. If you're worried about your premature baby's health, always seek professional medical advice.

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Premature and SCBU babies - Netmums Forum

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Welcome to the Netmums Forum for parents of premature and sick babies. Chat to other parents for support and advice in

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'Family integrated care is a model that supports and educates parents and carers to become integral participants in their baby's care from the time of admission to the NNU in partnership with the neonatal team'
Family Integrated Care (FICare) is a model of neonatal care which promotes a culture of partnership between families and staff; enabling and empowering parents to become confident, knowledgeable, and independent primary caregivers. Neonatal units with a strong FICare philosophy nurture families into this role by listening to them, building on their strengths, and encouraging their participation in experiences and decision-making to enhance control and independence. The FICare model ensures that they can be a family as soon as possible; creating space for necessary medical care whilst facilitating the nurturing bond and love that only they can provide for their baby (BAPM 2021). Evidence shows that babies looked after this way have fewer infections, are more likely to breastfeed, gain weight more quickly, have fewer complications and go home sooner.

While your baby is receiving care on a Neonatal Unit you will be able to do many of the day to day cares your baby needs. To ensure your baby's comfort and safety you will be taught all the skills you need to give all the non-medical care to your baby. It may seem frightening and overwhelming at first but with the right support and guidance your confidence will soon grow.

Your baby will receive a baby passport that will make sure that both you and the Neonatal Unit staff know what you are able to do for your baby. This will be particularly helpful if your baby is transferred to another hospital. Please ensure the passport is kept with your baby during their Neonatal Stay

The Northwest Neonatal ODN invests and recognises the importance of parents being the primary care giver to their baby. We support Neonatal units to deliver consistent high-quality standards through Family Integrated Care with an accreditation process. The 22 Neonatal units across the Northwest are committed to implementing and embedding FiCare. All the units are all working towards stage one accreditation. You will find the accreditation status of each the units within the unit specific information. Every Neonatal Unit is measured in line with the 4 pillars of FiCare -

Staff Education & support - Providing education and tools for staff to enable them to educate, mentor and support parents in caring for their infant in the NICU. Allowing staff to feel comfortable with the model of care and embrace their role as key facilitators of FICare. Leads to consistency in parent teaching sessions.

Parent education - Providing parents with the knowledge, skills, and confidence required to care for their infants in the NICU setting. Enabling parents to be part of the health care team by offering small group education and the opportunity to participate in medical rounds, while being supported by individual bedside learning.

NICU environment - Ensuring that unit policies and procedures are supportive of the model. Creating a physical and social environment that is conducive to the implementation of FiCare

Psychosocial Support - Providing adequate psychosocial support for families to enable their participation in FiCare. Creating and supporting opportunities for peer-to-peer support

The process of accreditation includes a review team made up of Parents, Medical staff, Nurses and Care Coordinators.

Parent's presence in Neonatal Care cannot be underestimated, parents are partners in care. Staff on the unit are there to support and guide you, please do not hesitate to discuss Family Integrated Care and how you can be fully involved in your baby's care.

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'Family integrated care is a model that supports and educates parents and carers to become integral participants in their baby's care from the time of admission to the NNU in partnership with the neonatal team' Family Integrated Care (FICare) is a model of neonatal care which promotes a culture of partnership between families and staff; enabling and empowering parents to become confident, knowledgeable, and independent primary caregivers.

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Peeps HIE Charity | HIE Awareness & Support

Welcome to Peeps HIE

We provide support to parents, families & friends of those affected by HIE (Hypoxic-Ischaemic Encephalopathy), raising awareness of HIE.

Some of the things we do include:

Provide information about HIE

Buddy/peer support

Counselling and therapy

Funding for equipment

Find out more about what we do...

Our Family stories

We pride ourselves on the support we can give to families experiencing the challenges of day-to-day life with children affected by HIE.

Read our Family Stories

Peeps on Twitter

Our information leaflets are written by families, with families, for families.
They can be downloaded from our website, or printed copies sent out - please get in touch if we can help support.

https://www.peeps-hie.org/resources-downloads/

#HeardOfHIE

2

If you'd like to find out more about our new book club, starting in 2024, and register an interest, please check out our website:

It will be online, peer-led, from the comfort of your own home, and just for H.I.E. parents/grandparents/carers.
Suggestions...

We recognise that each H.I.E. journey can be unique; we aim to provide support and guidance tailored to the diverse needs of our community.

Inclusion matters and is an agenda item on every meeting we have with Trustees and employees.

From informational resources to emotional...

Twitter icon
View more

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Peeps HIE Charity | HIE Awareness & Support

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Peeps is a UK charity, dedicated to supporting those affected by HIE (hypoxic-ischaemic encephalopathy). We provide emotional, practical and financial support.

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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. However, 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 deal with the loss of their baby later.

How you might feel

The grief that comes from losing your baby can be much deeper and last longer than most people expect. Although people may say that you will 'get over it', you are likely to 'contain' the experience and carry it with you for the rest of your life. Everyone's circumstances are different and every experience is individual.

In the first few days, you may find it difficult to believe that your baby is no longer with you and it may seem as if you are in a bad dream. The reality will slowly unfold and you may experience the pain at its worse just when you, and others, think that it should be 'getting better'.

Parents, especially mothers, easily blame themselves for their baby's condition and often feel guilty, as if they should have been able to stop the death from happening. You may feel angry with yourself, your loved ones and the health professionals who looked after your baby.

The death of a baby is a devastating experience. The effects of grief can be overwhelming and it can be hard to take in information, to make decisions or to imagine how you are going to cope. Often parents feel overwhelmed and frightened by the intensity of their emotional and physical pain. The grief process will take its course, but if you are concerned, it may be beneficial to seek help.

Talking things through with someone who understands can make you feel less isolated and help you see that your feelings are entirely appropriate. Understanding the grieving process can help to reassure you that what you are feeling is normal. It may be helpful to talk to your GP, a bereavement counsellor or another professional supporter.

You might also find it helpful to download or order the Sands booklet Saying goodbye to your baby

Parental Bereavement Leave and Pay

If your baby has died, you are entitled to Parental Bereavement Leave. Anyone whose child has died before their 18 th birthday on or after 6 April 2020 will be entitled to 2 weeks of statutory leave for each child that has died. This includes parents of children who are stillborn after 24 weeks' pregnancy. All employed parents have a day one right to this leave.

You may also be entitled to Statutory Bereavement Pay. This is where anyone whose child has died before their 18 th birthday on or after 6 April 2020 is paid at the statutory rate during their 2 weeks of leave. Whether you qualify for Statutory Bereavement Pay depends on the amount you earn and how long you have been working for your current employer.

For more information about who can claim, please visit the government website.

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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.

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CATCH - Common Approach To Children's Health

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CATCH eases the sense of information overload, particularly regarding pregnancy and children's health. With the number of resources available, it can be difficult to know who to trust. CATCH provides local NHS-approved information with your best interests at heart, so you won't need to look elsewhere.

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We know that many parents struggle with their mental health after having a premature baby or sick baby on the neonatal unit. Whatever you might be feeling, you are not alone. Find out more about how to get help and support.

It's OK to not feel OK

Having a baby is a big life event, which alone can trigger changes in people's emotional well-being. When you have also faced trauma, unexpected challenges and upsetting situations, it is common for you to see some changes in your mental health and how you feel able to cope.

Often parents don't feel they can talk to anyone when they are suffering with their mental well-being on the unit. This can be because they are worried that they'll be seen as 'not coping', or that people might think they're not able to care for their baby. It could also be because they feel guilty, or that they feel they should be worrying about their baby instead of themselves.

You are not alone

Knowing that you are not alone, and that you can talk to someone about what you're experiencing, can be the first step to getting support. Being aware that what you're feeling is common with parents who have been through what you have experienced might give you some comfort.

The first thing you can do to help yourself is to be kind to yourself. There is no expectation of you to handle things in any particular way.

How you feel may change day to day, and throughout your time in neonatal care and once you go home. And it is OK to not feel OK.

Opening up about how you feel is not a sign of weakness - in fact, it takes great strength to face what you are experiencing.

Talking to someone

You may feel that talking to someone makes your feelings feel 'real' and that might feel quite scary to begin with. However, talking to someone can often be a first step to finding what might help you.

It might also feel hard for you to notice or recognise changes in the way you are, so someone close to you might start a conversation about helping you instead.

However these conversations happen, it might be hard at first to talk about what you are facing. You might find it hard to put your feelings into words, or it might be overwhelming to open up. But sharing how you are feeling with someone else will mean that they have the information to be able to help you find the best support, whatever that might be for you.

You may find that over time it becomes easier to talk to someone and be open with how you feel. It is important to take things at your own pace.

Who should I talk to?

You might want to talk to someone very close to you who knows you well, like your partner, a parent or a close friend or family member. Many parents get a lot of support from opening up to someone they know and trust.

It might be that you are facing challenges in a very different way to your partner. That can make it harder for some people to talk to each other.

You could also feel that you don't want to burden someone close to you, or that you don't want to worry them.

Because of this, some people find it easier to talk to someone they don't know so well, like a health professional on your unit or your GP. There might be a counsellor available on your unit for you to make an appointment with.

Hospitals also have chaplaincy services which offer support to parents of any or no religion. Some parents find it useful to talk to someone who is removed from their situation, who can listen to what they're experiencing.

You can ask a nurse on your unit about how you can talk to the chaplaincy team. Someone from the chaplaincy team might also come around the unit to see if you would like to talk.

These are just are a few of the different people you could talk to. You might have other options available to you.

Different people will find support in different places. It might be that you find talking to a few different people will help you in different ways.

Take time to think about who might offer support in a way that's right for you.

You might not feel ready to talk to someone in person yet. There is a lot of online support available which many parents find very helpful in letting them know that they are not alone, and that other people are facing what they are facing. You might want to try:

This kind of support is available day or night, when you need it.

Many dads tell us that they find it hard to reach out for support while their baby is on the neonatal unit. The Bliss Facebook group and Netmums forum are places for all parents, and we encourage everyone, including dads, to access support when it's needed.

The main feeling was shock, like reality was distorted. Time was moving strangely. I remember crying, hoping and wishing. I didn't feel I had control - I had to put all my faith in others.

Support from mental health charities and organisations

There are many charities and organisations there to support you. Here's a list of some that might be helpful to you.

NHS Choices Moodzone - practical information, interactive tools and videos from the NHS to help you look after your mental health

Mind - the mental health charity, providing advice and support to empower anyone experiencing a mental health problem

PANDAs Foundation - a support service for families suffering prenatal, antenatal and postnatal mental illnesses

Mental health helplines - a list of mental health helplines from different organisations, collected together by NHS Choices

Young Minds - providing support for young peoples' mental health

Sands - the stillbirth and neonatal death charity, supporting anyone affected by the death of a baby

Twins Trust - providing support for parents with multiples

Child Bereavement UK - a charity supporting families when a child dies or grieves

OK Rehab - a support service for people that may be struggling with alcohol or substance addiction

Do you need urgent help with your mental health?

If you have had thoughts of self-harming or suicide, get help right away. Contact your local A&E department, emergency GP service, or call The Samaritans on 116 123.

The information in this section is due for review in September 2022.

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Getting support with your mental health | Bliss

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We know that many parents struggle with their mental health after having a premature baby or sick baby on the neonatal unit. Whatever you might be feeling, you are not alone. Find out more about how to get help and support.

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Only 18% of those surveyed saw no change in their mental health and only 2% said their mental health improved.

Of the parents we surveyed, 39% said that although they weren't officially diagnosed with a mental health condition in connection to their experience on the neonatal unit, they think they do or did have one.

Mental health conditions

For those who were diagnosed with a mental health condition, anxiety, post traumatic stress disorder and postnatal depression were the most common.

23% of parents had anxiety after their time on the neonatal unit.

16% said they suffered with post traumatic stress disorder.

14% said they had postnatal depression.

1% said they had postpartum psychosis.

6% reported "other" diagnoses including:
Obsessive Compulsive Disorder (OCD), separation anxiety, suicidal thoughts, worsening of pre-existing conditions such as depression, bipolar disorder or anxiety.

30% of parents surveyed said that they were not diagnosed with a mental health condition after their time on the neonatal unit and do not think they had one.

Access to support on the unit

62% of parents didn't have access to psychological support when they needed it while on the neonatal unit.

6% had some access to formal psychological support but not enough.

8% felt they had the right amount of psychological support.

24% said they had no psychological support but did not want it.

Access to support after leaving the unit

45% of parents didn't have access to psychological support when they needed it after leaving the neonatal unit.

15% had formal psychological support but no longer use it.

10% still use formal psychological support.

28% did not have any psychological support but did not want it.

2% of those surveyed were still on the neonatal unit so the question didn't apply to them.

Scientific research shows that there can be a link between having a baby in neonatal care and how that affects your mental health as a parent.

Parents with a premature baby are 50% more likely to experience psychological distress compared with parents who do not spend time on the unit

Research also shows that parents who have had a premature baby can find there is more of a stress on their family life compared with families whose baby did not spend time on the unit.

Post traumatic stress disorder and childbirth

PTSD can begin after childbirth, with extreme distress during traumatising events linked to how symptoms appear.

Parents whose baby is born premature or sick often experience trauma during birth. This can be for lots of different reasons. Some of the most common experiences are:

Suffering anxiety after giving birth before parents were expecting to

Going into labour suddenly, and outside of a hospital

Having emergency surgery, such as a cesarean section

Specific parts of the birth, for example lots of blood loss or being alone

Being separated from their baby as soon as they're born

Research also shows that parents who don't feel they know enough about their situation or what is happening to their baby, or who don't feel sure of what will happen next, c an struggle more with their mental health.

Can babies pick up on depression?

Premature babies can sometimes pick up when their mum is struggling with depression.

One study showed that a premature baby's stress levels can increase if their mum is suffering with depression.

But this does not mean that parents who are needing support with their mental health or who are finding things challenging should not care for their baby - in fact the opposite is true.

Many studies show that being involved in your baby's care has positive effects for you, your family and your baby. This is why it's really important to look after your own needs too, and to get support if you feel as though you are struggling.

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Is it common for parents to struggle with their mental health? | Bliss

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Only 18% of those surveyed saw no change in their mental health and only 2% said their mental health improved. Of the parents we surveyed, 39% said that although they weren't officially diagnosed with a mental health condition in connection to their experience on the neonatal unit, they think they do or did have one.

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If you are struggling please talk to a member of our team. We are here to help & talk things through with you. We can signpost you to additional support. We also have a dedicated nurse for psychosocial support.

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In this section, we outline the importance of providing psychosocial support to parents and families.

Importance of psychosocial support

Parents in the NICU often feel lost and overwhelmed. Psychosocial support for families is necessary to enable them to overcome their fear and engage as a partner in the NICU care of their infant. Psychosocial support can be provided in many different ways. Most units provide some professional support for families, either through social workers or mental health workers. In addition, within FICare, opportunities need to be provided for peer-to-peer support.

Peer-to-peer support

Through the sharing of experiences, NICU parents help each other validate feelings, reduce isolation, and increase parents' comfort interacting with medical professionals. The provision of space for families to congregate such as a lounge, and pump room is an important facilitator of the model. Participating in parent education programs also allows for this sharing. Peer-to-peer support may be organic if opportunities are provided for it to grow; however, it must be supported by staff.

Veteran Parents

Veteran parents can enhance this opportunity either by providing one-to-one support, participating in a parent education program, or by organising social events for parents. Click here to find out more about the role of Veteran Parents, and to access a wealth of resources to educate and support families.

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Psychosocial Support - Family Integrated Care

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In this section, we outline the importance of providing psychosocial support to parents and families. Peer-to-peer support Through the sharing of experiences, NICU parents help each other validate feelings, reduce isolation, and increase parents' comfort interacting with medical professionals. The provision of space for families to congregate

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Ward Information
About Neonatal Care
Birth & Delivery
Family Integrated Care (FiCare)
Feeding
Crying
Sleep
Transport
First Aid
Mental Health & Wellbeing
Support For Parents
Dads
Clinic Information
Screening Tests
Immunisations
Car Seat Safety
Useful Apps
Feedback

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May sometimes be referred to as a PKU
Completed on day 5 of life

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Every baby is offered newborn blood spot screening, also known as the heel prick test, ideally when they're 5 days old.

What is the blood spot test?

Newborn blood spot screening involves taking a blood sample to find out if your baby has 1 of 9 rare but serious health conditions.

Most babies won't have any of these conditions but, for the few who do, the benefits of screening are enormous.

Early treatment can improve their health, and prevent severe disability or even death.

What does the blood spot test involve?

When your baby is 5 days old, a healthcare professional will prick their heel and collect 4 drops of blood on a special card.

You can ease any distress for your baby by cuddling and feeding them, and making sure they're warm and comfortable.

Occasionally, the sample may need to be taken when your baby is 6, 7 or 8 days old.

Sometimes a second blood spot sample is needed. The reason for this will be explained to you. It doesn't necessarily mean there's something wrong with your baby.

The test doesn't carry any known risks for your baby.

Which conditions is the blood spot test for?

The blood spot test screens for the following 9 rare but serious conditions.

If you, your partner or a family member already has one of these conditions (or a family history of it), tell your healthcare professional straight away.

Sickle cell disease

About 270 babies are born with sickle cell disease in the UK each year. This is a serious inherited blood disease.

Sickle cell disease affects haemoglobin, the iron-rich protein in red blood cells that carries oxygen around the body.

Babies who have this condition will need specialist care throughout their lives.

People with sickle cell disease can have attacks of severe pain and get serious, life-threatening infections. They're usually anaemic because their blood cells have difficulty carrying oxygen.

The blood spot screening test means that babies with sickle cell disease can receive early treatment to help them live healthier lives. This may include vaccinations and antibiotics to prevent serious illnesses.

Pregnant women are also routinely tested for sickle cell disease early in pregnancy.

Read more about sickle cell disease.
GOV.UK also has a factsheet about sickle cell disease
Cystic fibrosis

About 1 in 2,500 babies born in the UK has cystic fibrosis. This inherited condition affects the digestion and lungs.

Babies with cystic fibrosis may not gain weight well and are prone to chest infections.

Babies with the condition can be treated early with a high-energy diet, medicines and physiotherapy.

Although children with cystic fibrosis may still become very ill, early treatment can help them live longer, healthier lives.

Read more about cystic fibrosis.
GOV.UK also has a leaflet for parents whose baby has suspected cystic fibrosis
Congenital hypothyroidism

About 1 in every 2,000 to 3,000 babies born in the UK has congenital hypothyroidism. Babies with congenital hypothyroidism don't have enough of the hormone thyroxine.

Without thyroxine, babies don't grow properly and can develop learning disabilities.

Babies who have the condition can be treated early with thyroxine tablets, and this allows them to develop normally.
The British Thyroid Foundation has more information about congenital hypothyroidism
Inherited metabolic diseases

It's important to let your healthcare professional know if you have a family history of a metabolic disease (a disease that affects your metabolism).

Babies are screened for 6 inherited metabolic diseases. These are:

About 1 in 10,000 babies born in the UK has PKU or MCADD. The other conditions are rarer, occurring in 1 in 100,000 to 150,000 babies.

Without treatment, babies with inherited metabolic diseases can become suddenly and seriously ill. The diseases all have different symptoms.

Depending on which one affects your baby, the condition may be life threatening or cause severe developmental problems.

They can all be treated with a carefully managed diet and, in some cases, medicines as well.

Severe combined immunodeficiency (SCID)

In some areas of England, screening for a condition called severe combined immunodeficiency (SCID) is also being offered as part of the newborn blood spot test. This is to help the NHS decide if screening for SCID should be offered to all babies in England.

SCID causes problems with the immune system. It makes it very hard for a baby to fight off infections like meningitis and pneumonia, which can be life-threatening. About 14 babies born each year in England have SCID.

Ask your midwife if screening for SCID is being offered in your area.
Great Ormond Street Hospital for Children has more information on severe combined immunodeficiency

Does my baby have to have the blood spot test?

The blood spot test is not compulsory, but it's recommended because it could save your baby's life.

You can choose to have screening for sickle cell disease, cystic fibrosis or congenital hypothyroidism individually, but you can only choose to have screening for all 6 inherited metabolic diseases or none at all.

If you don't want your baby to be screened for any of these conditions, discuss it with your midwife.

You should be given information about the blood spot test and the diseases it screens for in advance so you can make an informed decision for your baby.

If you change your mind, babies can be screened up to the age of 12 months for all the conditions except cystic fibrosis. Cystic fibrosis can only be screened for up to 8 weeks of age.

If you have any concerns about the tests, speak to your midwife, health visitor or GP.

When will we get the results?

You should receive the results either by letter or from a healthcare professional by the time your baby is 6 to 8 weeks old.

The results should be recorded in your baby's personal child health record (red book). It's important to keep this safe and take it with you to all your baby's appointments.

If you haven't received your baby's results, speak to your health visitor or GP.

You'll be contacted sooner if your baby screens positive. This means they're more likely to have one of the conditions tested for.

You'll be contacted:

the day the result is available, or the next working day, if your baby is thought to have congenital hypothyroidism (CHT) - you'll be given an appointment to see a specialist

before your baby's 4 weeks old if they're thought to have cystic fibrosis

before your baby's 6 weeks old if they're thought to have sickle cell disease

Screening for cystic fibrosis finds some babies who may be genetic carriers of the condition. These babies may need further testing.

Screening for sickle cell disease also finds babies who are carriers of this or other red blood cell diseases.

Carriers are healthy, although they can experience problems in situations where their bodies aren't getting much oxygen - for example, if they're having an anaesthetic.

Parents of babies who are found to be carriers should be told by the time they're 6 to 8 weeks old.

What do the results mean?

Most babies will have a normal result, which means it's unlikely that they have any of the conditions.

A small number of babies will screen positive for one of the conditions. This doesn't mean they have the condition, but they're more likely to have it. They'll be referred to a specialist for more tests.

It's important to know that screening isn't 100% certain. A baby with a negative screening result may later turn out to have the disease screened for. This is known as a false negative.

Babies with a positive result sometimes turn out not to have the disease - what's known as a false positive.

Occasionally, other medical conditions are picked up by blood spot test screening. For example, babies with beta thalassaemia major, a serious blood disease, will usually be detected. These babies also need to be referred for early treatment.

More information

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Your guide to the newborn blood spot (heel prick) test, including which diseases it screens for and when to expect the results

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What can you provide for your baby?
- Nappies
- Nappy Wipes/ Cotton Wool
- Cotton Buds
- Musilin Cloth
- Barrier Cream
- Small Washable soft toy
- Dummy (Personal preference - speak to your nurse about this)
- Clothes (Vest, baby grow, cardigan & hat)
The neonatal unit does supply clothes if you do not have any that fit your baby. If you are unsure what size of clothing to get, speak to your nurse.

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Overview

This data shows the estimated number of tuberculosis ( TB) cases, the rate of TB by country and World Health Organization ( WHO) region, and by high or low incidence of TB.

These tables show TB rates worldwide:

Definition of high incidence

With reference to the National Institute for Health and Clinical Excellence ( NICE) recommendations for BCG vaccination and screening in England and Wales, countries and territories with an estimated incidence rate of 40 per 100,000 or greater are considered to have a high incidence of TB.

Countries with rates greater than or equal to 150 per 100,000 have been signposted with 'Yes'.

Estimates of tuberculosis incidence by country, 2020
Table 1: High incidence countries (estimated incidence rate of 40 per 100,000 or greater) Table 2: Low incidence countries (estimated incidence rate less than 40 per 100,000)
Table 1: High incidence countries (estimated incidence rate of 40 per 100,000 or greater)

Country or territory

WHO region

Estimated rate per 100,000 population

Number of cases

Rate ≥150 per 100,000

Table 2: Low incidence countries (estimated incidence rate less than 40 per 100,000)

Country or territory

WHO region

Estimated rate per 100,000 population

Number of cases

Data sources

Data presented here is an extract of data available for download from the WHO website. The 'estimated rate per 100,000 population' and the 'number of cases' have been rounded to the nearest whole number.

Only 'best estimate' figures of incidence are included here. Uncertainty bounds for these estimates are included in data downloadable from the WHO website and should be referred to if further interpretation of the figures is required.

Details of the methods used for the estimation of incidence can be found in the WHO report Global tuberculosis control 2020. Also available online are:

Accessed: 31 May 2022

Citation

For citation purposes the following is suggested:

UKHSA. World Health Organization ( WHO) estimates of tuberculosis incidence by country, 2020

Enquiries regarding this table should be directed to Tuberculosis Unit staff at tbsection@phe.gov.uk

TB Surveillance Team
Tuberculosis Unit
National Infection Service
UKHSA
61 Colindale Avenue
London
NW9 5EQ

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WHO estimates of tuberculosis incidence by country and territory, 2020 (accessible text version)

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A Stay in Neonatal Care - Preparing to Take Your Baby Home

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Retinopathy of Prematurity (ROP) is something that is routinely screened for. Here is some more information.

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Have you ever wished you had a copy of that special occasion or memorable moment that you could keep forever and share?

With an Online Book, you can document all of your favourite moments forever - your photos, videos, and memories. And coming shortly you can share them with family and friends.

To offer these special keepsakes, we have teamed up with Cornish-based The Online Book Company who create interactive online books for all occasions.

These beautiful books are

Simple to create

Easy to update

A wonderful gift

View our beautiful Online Books

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With an Online Book, you can document all of your favourite moments forever - your photos, videos, and memories. And coming shortly you can share them with family and friends. To offer these special keepsakes, we have teamed up with Cornish-based The Online Book Company who create interactive online books for all occasions.

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@colourfulbeginnings (Instagram)
Charity supporting NICU families
Raising awareness s& providing treasure boxes.

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Around 60,000 babies are born prematurely every year in the UK
This means that 1 in every 13 babies is born before 37 weeks. At Colourful Beginnings, we support families with premature and sick babies in Neonatal Intensive Care Units (NICUs) all over the UK. We provide support, care and companionship to families with premature babies, and provide a platform for all those affected by premature births to come together to support each other, no matter what stage they are on their NICU journey.
Testimonials

"Our package arrived yesterday!! I was blown away by it - nothing like what I expected it to be and we can't thank you enough! Especially for the personalised touches, it's so lovely, and I can't wait for Lila to fit into her baby grow! I've started back filling in her NICU journal and it's made me realise how much I've forgotten already in the haze of the first weeks, but equally how important it is to capture and record, which future me will be so grateful for."

"Received your gift when spending time at SCBU, it really did help me and found so much comfort in reading your letter knowing others understand how I was feeling. Can't thank you enough for the support I felt just from reading it. My baby boy was born at 2.6Ibs when I was 28+6 days, we've been home a couple of days now and it's the most surreal but amazing feeling ever."

If you would like to share your story, donate, partner with us or support our vital work in other ways, please get in touch. Your contribution is the catalyst to support families in need at a critical time in their lives.

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Around 60,000 babies are born prematurely every year in the UK This means that 1 in every 13 babies is born before 37 weeks. At Colourful Beginnings, we support families with premature and sick babies in Neonatal Intensive Care Units (NICUs) all over the UK.

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@icklepicklescharity (insta)

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The Ickle Pickles Children's Charity | The Ickle Pickles

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Giving every newborn a chance, One in 8 babies are born sick or prematurely each year in the UK, that's over 95,000 babies every year