Neonatal - You and your premature baby - Having a premature baby less than 27 weeks into pregnancy

We know this may be a very worrying time for you and your family.

If there is a chance your baby may be born early, you may have many questions. This leaflet explains what might happen and the choices you may be asked to make.

If English is not your first language, please ask for an interpreter.

Who is this information for?

You have been given this information because your healthcare team think that you may have your baby early (prematurely). You and your family need to know what is likely to happen to you and your baby if this occurs.

We will help you to make some important choices about your care before and during labour if early delivery was to happen. The obstetric team (doctors who care for pregnant women) and neonatologist (doctor who looks after sick Newborn babies) will discuss what this means for you, and you will have the opportunity to ask any questions that you wish.

What does this mean?

A pregnancy normally lasts for around 40 weeks. How many weeks you are in your pregnancy is called gestation.

Babies born before 22 weeks gestation are usually too small and underdeveloped to survive outside the womb. Their lungs and other organs are not ready to work on their own yet. Some tiny babies may show signs of life for a short time after birth, but even with the very best neonatal care they cannot survive for more than a few minutes or hours.

Babies born very early (after 22 weeks) are extremely fragile. Some babies may not survive the labour or birth itself. If a baby is born alive, survival depends on how well they are at birth, and whether they are strong enough to receive intensive care. Even with the best treatment, some extremely premature babies sadly die despite this treatment.

Babies born earlier in pregnancy have a lower chance of surviving. More detailed information is provided later in this leaflet.

If you are at risk of extremely preterm delivery, you may be offered the following:

• Ultrasound to look at your baby's growth and wellbeing and sometimes to check the length of your cervix
• Antenatal steroids from around 23 weeks, we can give steroid injections to mothers which help to develop the baby's lungs
• Magnesium sulphate after 23 weeks we can give mothers an infusion of magnesium sulphate during labour to help protect their baby's brain

If there is time before your baby is born, we may invite you to visit the neonatal unit. This is the area where babies born very early receive specialist care.

Some parents find it helpful to see where their baby may go and to meet the staff who work there. This is also a chance to ask any questions you have.

What does this mean for your baby?

Every baby is different, the number of weeks of pregnancy is important, but it is not the only factor. Doctors will also consider:

• Your baby's size and growth
• Whether there are signs of infection
• Whether this is a single baby or twins/triplets
• How well your baby is at birth
• How well you are at the time of delivery
• Whether they are a boy or a girl

What is right for your baby and your family is very individual to you. We will talk with you about your baby's situation and what it may mean.

Making decisions together

If your baby may be born between 22 and 26 weeks, there are important decisions to make.

These decisions are made together with you. There is no single right choice. We will consider:

• Medical information
• The likely outlook for your baby
• What feels right for you and your family

Plans can be reviewed if circumstances change.

The way your baby is born

For babies born very early there is no evidence that their health is improved by a Caesarean section over a normal vaginal birth.

A caesarean section is a major operation and may be more difficult in early pregnancy and carries a health risk for the baby's mother.

• Before 24 weeks a Caesarean birth is not usually recommended unless your life is at risk
• From 24 weeks gestation, a caesarean section may be considered for certain situations, for example transverse position (where baby's position is lying sideways across the womb)
• After 26 weeks gestation Caesarean section would be offered in same situations as for babies born later in pregnancy

Heart rate monitoring for your baby

After 26 weeks, your baby's heartbeat is usually monitored continuously during labour.

Before 26 weeks, continuous monitoring is not normally used unless a caesarean section is considered due to other problems that have been detected. Instead, the midwife will listen to your baby's heartbeat regularly.

Your team will explain what is planned and why.

What may happen to my baby after birth?

If your baby is born very early there are different approaches to their care, parents and doctors will make decisions together about the approach of care that is best for your baby.

Survival-Focused care

The aim of this care is to help your baby survive. This may include:

• Help with breathing
• Medicine
• Admission to a neonatal intensive care unit (NICU)

Neonatal Intensive Care (NICU)

You and the team involved in your care may decide that starting neonatal intensive care would be best for your baby.

The neonatal team will also talk to you before birth about the treatment that will be given to your baby immediately after birth and what may happen next depending on how your baby responds to this treatment.

A neonatal team will be present at the birth. They will assess your baby, explain what is happening and involve you in decisions.

Very premature babies can get cold quickly, so your baby may be placed in a plastic bag immediately after birth to keep them warm.

You will usually be able to see your baby before they are transferred to the neonatal unit. Once your baby is stabilised, you will be able to spend time with them and will have the chance to ask the neonatal team questions.
 
You will be able to take photos before transferring to the neonatal unit. Your baby is not weighed until they reach the unit. When we have transferred baby into the incubator, settled them, and placed lines to give fluid and medicines, usually in the umbilical cord vessels, you will be able to see your baby.

Comfort-Focused Care (Palliative Care)

In some situations, you and the medical team may decide that it is best to provide comfort-focused care for your baby.

This may be because:

• There is a very high chance that your baby will not survive, or
• Intensive treatment is unlikely to help and may cause long term suffering

Comfort-focused care means keeping your baby comfortable with special care, free from distress, without invasive treatment.

We understand that this is an incredibly difficult decision. We will support you throughout.

You can hold your baby, talk to them, and spend as much time together as you wish.

More information about this type of care is available from Together for Short Lives (details at the end of this leaflet).

Stillbirth

Some babies who are born very early do not survive labour or birth.

If this happens, you will be able to spend lots of time with your baby. The staff will also support you in making memories and will provide you with special items to keep.

If your baby is born at 24 weeks gestation or over, without signs of life, their birth must legally be registered as a stillbirth.

If your baby is born below 24 weeks gestation, and does not show signs of life, you will not have to register the birth. Other options for a record of your baby's birth are available if you would like this.

The team will support you with anything you need to do.

Transfer to a different hospital

Antenatal transfer (before birth)

Not all hospitals have specialist neonatal intensive care units. If your baby is likely to need this level of care, you may be transferred to another hospital before birth. Sometimes we may also need to transfer you if our neonatal unit is full.

We understand this can feel worrying, especially if it means being further from home. The team will support you and signpost you to help with accommodation or financial support.

Sometimes mothers are transferred and then do not deliver early. This can happen because it is difficult to predict exactly when labour will start.

Postnatal transfer (after birth)

If you are too unwell or too close to delivery to be moved before birth, your baby may be transferred by a specialist neonatal transport team after birth.

If you are unable to travel straight away, the team will move you to be with your baby as soon as it is safe.

What will my baby look like?

Babies born this early are very small and may weigh less than 500 grams. They may look different from babies born at full term.
Their skin can appear thin and shiny, and often much darker than you would expect. They may have fine hair on their body. Their eyes may not yet have opened. Some babies may cry or breathe on their own. Others may need help with breathing.

Seeing your baby surrounded by equipment can feel overwhelming at first. The team will explain everything and support you.

What will happen when my baby is born?

Babies born very early are very fragile. The earlier a baby is born, the more help they will need after birth.

For babies born before 24 weeks, what happens next can be very uncertain. At 22 weeks, survival is extremely rare, even if a baby shows signs of life at birth.

You will be able to discuss your baby's care with senior doctors (obstetrician and neonatologist).

When your baby is born, the team will assess how well they are breathing and responding. This helps guide the next steps.
 
If you are in this situation, senior doctors will talk with you about what they are seeing at the time of birth and the options available. Decisions are made together, based on your baby's condition and your wishes.

It is normal to feel apprehensive, as there is a lot of equipment to help monitor your baby, but the team caring for your baby will be able to explain this to you.

22 weeks

Sadly, survival is extremely rare. Care usually focuses on comfort care and time together.

This means you will be able to spend quiet time in private with your baby and hold and cuddle them if you wish. If baby has died before being born, they will usually be still. Occasionally, where babies have died very close to being born, they may make brief reflex movements that disappear very quickly.

If your baby is born alive, they may take a breath and make a small cry or they may not breathe. Signs of life may last for several hours, and we will make sure your baby is comfortable and not suffering. Very rarely, if babies are very active, the doctors will decide with you if more support would be helpful.

23 weeks

There is a lot of uncertainty. Some babies may survive with intensive care. Decisions are made together after detailed discussion.

At this stage there is great uncertainty about outcome for babies. Stabilisation and intensive care will be offered after discussion with yourselves and the senior neonatologist, depending on your individual circumstances. Otherwise, you may wish for comfort care.

24 weeks

Intensive care is usually recommended, although your baby's condition at birth will influence how we will care for your baby.

Stabilisation and full intensive care are usually offered, unless parents and doctors agree that chance of survival is very poor based on problems with pregnancy or on scans, or if baby is very weak and poorly at delivery and does not respond to support.

25-26 weeks

Most babies will receive full intensive care. Survival rates are higher than at earlier weeks.

A neonatal team of doctors and nurses will be present at your delivery. They will involve you in decisions about your baby. Your baby will be delivered into a plastic bag as this is the most effective way to keep your baby warm.

What if my baby doesn't come now?

It is usually safest for your baby to stay in the womb for as long as possible, as long as you are both well. Even a few extra days can make a difference to your baby's development.

If your situation changes, we will review your plan with you and talk through the next steps.

Problems preterm babies may have

Babies born very early are at higher risk of health and developmental difficulties.

These may include:

• Breathing problems and lung damage
• Bleeding in, or changes to their brain
• Bowel problems and problems with feeding
• Sight or hearing problems
• Physical and learning developmental problems

These can range from mild to severe. It is not always possible to predict long-term outcomes at birth. The earlier a baby is born, the higher the risk. Your doctors and midwives will talk to you about what they expect for your baby.

We will keep you informed and involved throughout your baby's care.

Outcomes

What does severe disability mean?

In national UK guidance, severe disability means one or more of the following:

• Severe learning difficulties, needing lifelong support
• Severe cerebral palsy, meaning may need support to walk or move
• Blindness or profound hearing loss

Disability means different things to different families. Some children may need additional support but still lead full lives.

Many babies who survive extreme prematurity grow up without severe disability. Others may have milder challenges that become clearer as they grow older.

Factors that can impact your baby's outlook:

• How well your baby is growing
• Infection during pregnancy
• When your waters broke
• Whether the baby is one of twins or triplets
• Whether you receive steroids before birth
• Whether birth happens in a hospital with a specialist neonatal intensive care unit

Studies that follow children born extremely early show that outcomes vary.

Some children grow up without severe disability.

Some may need extra support in school or have movement, learning or health difficulties.

Around two-thirds of babies who survive do not develop severe disability. However, some children may experience challenges that only become clear later in childhood.

• 22+0 - 22+6 weeks: 1-in-3 survivors have severe impairment*
• 23+0 - 23+6 weeks: 1-in-4 survivors have severe impairment
• 24+0 - 24+6 weeks: 1-in-5 survivors have severe impairment
• 25+0 - 25+6 weeks: 1-in-9 survivors have severe impairment
• 26+0 - 26+6 weeks: 1-in-12 survivors have severe impairment

*Presently, relatively few babies born at 22 weeks of gestation have available long-term outcome from available data; however, it is believed that the proportion of such babies with severe impairment is at least 30%.

How decisions are made nationally in the UK

Doctors do not make decisions just based on gestational age (how many weeks of pregnancy the baby is born).

Instead, they also consider:

• Gestational age
• Baby's individual risk factors
• How likely baby is to survive
• How likely baby is to survive with serious long-term disability
• Parents' wishes and values

Risk profiles for a poor outcome (death or survival with severe disability)

Babies are usually described as being at:

• Extremely high risk
• High risk
• Moderate risk

These risk profiles help guide discussions.

What do the National survival figures show?

These numbers are UK population averages. Every baby is different.

Babies born at 22 weeks

Out of 10 babies born alive:
About 2 will survive to leave hospital if intensive care is given
About 3 will survive to leave hospital if admitted to a neonatal unit

Among survivors:

About 1 in 3 has severe long-term disability

Many babies at 22 weeks are considered extremely high risk, especially if there are additional risk factors

Babies born at 23 weeks

Out of 10 babies born alive:

About 4 will survive to leave hospital with intensive care

Among survivors:

About 1 in 4 has severe long-term disability

Decisions are often shared with parents, depending on individual risks.

Most babies at 23 weeks are considered high risk.

If your baby is born at 24 weeks or above, your baby will be routinely offered stabilisation and intensive care.

Babies born at 24 weeks

Out of 10 babies born alive:

About 7 will survive to leave hospital

Among survivors:

About 1 in 5 have severe long-term disability

Many babies are in the moderate-risk group

Babies born at 25 weeks

Out of 10 babies born alive:

About 8 will survive to leave hospital

Among survivors:

About 1 in 9 has severe long-term disability

Most babies are in the moderate-risk group

Babies born at 26 weeks

Out of 10 babies born alive:

About 8-9 will survive to leave hospital

Among survivors:

About 1 in 12 has severe long-term disability

Most babies are in a moderate-risk group

Definitions

Mild disability - Children with mild learning problems or other impairments such as squints, which do not interfere significantly with everyday life.

Moderate disability - Children who have reached a reasonable level of independence, e.g. cerebral palsy but still able to walk, lower than average IQ, hearing loss correctable by a hearing aid, impaired vision without blindness.

Severe disability - Children with problems that require dependency on carers e.g. cerebral palsy, preventing a child from walking, inability to feed themselves, profound hearing problems and blindness.

What if I have more questions?

You are as parents central to decision-making.

We will:

• Explain the situation clearly and honestly
• Listen to your values, hopes and concerns
• Review plans if circumstances change

We will keep talking with you. If anything changes, we will look at the plan again together.

You can ask for:

• More time to think, if possible
• Another discussion with the team
• Written information
• Support from specialist nurses, psychologists or chaplaincy services

You are not expected to make these decisions alone. Decisions about extremely early birth are made together, based on medical information and what matters most to you and your family. Please ask any questions at any time. We are here to support you.

You may want to use this space to write down some questions to discuss with the team.

Many families find it useful to have follow-up discussions, so please ask to speak to the neonatal and maternity team again at any point.

Useful contact details:

SPOONS - Spoons is a charity that supports families who experience neonatal care in Greater Manchester
https://www.spoons.org.uk

Bliss - Premature and sick baby charity
http://www.bliss.org.uk/

TOMMY's together for every baby - Provide free information and app about pregnancy and premature birth
https://www.tommys.org/

Together for Short Lives - Charity for babies and children with life-limiting conditions
https://www.togetherforshortlives.org.uk/
Helpline: 0808 8088 100

Sands - Stillbirth and neonatal death charity
https://www.sands.org.uk
Helpline: 0808 1643332
Email: helpline@sands.org.uk