Neonatal - Consent on the Neonatal Intensive Care Unit

Dear Parents

Your baby has been admitted to the Neonatal Intensive Care Unit (NICU) because they need specialised medical care that cannot be provided on the regular postnatal ward.

We understand this may be an overwhelming and distressing experience for you and your loved ones. You might be feeling shocked or experiencing a sense of loss that things have unfolded differently than you expected. This is completely normal and understandable.

Please know that we are here to support you throughout your baby’s stay in the NICU. Our dedicated team is committed to:

• Ensuring you fully understand all tests and treatments your baby receives
• Providing clear information about your baby’s condition
• Discussing all available treatment options with you
• Supporting you in making informed decisions about your baby’s care in partnership with the medical and nursing team

With our guidance and the information, we provide, we hope you will feel more confident in understanding and participating in your baby’s care decisions. Rest assured; we are always working in your baby’s best interests.

Please take time to read the information provided below. If you have any questions or do not understand something, please do not hesitate to ask us. We are here to help you through this journey.

The NICU Team

What is consent?

‘Consent’ means giving your agreement or permission to the NICU staff to care for and treat your baby. We will give you visual and verbal information so you can understand your baby’s condition and the treatment/tests required. You will be able to ask questions at any time.

When you agree to the admission of your baby to the neonatal unit then this usually means that you are agreeing and giving consent to several routine treatments and investigations that are essential for you baby’s health and well-being.

There are some treatments and investigations for which we will specifically seek consent. Some of these require your signature on a form. This does not necessarily mean that these are more important but simply reflects a different consent process.

Remember – please ask if you are in any doubt.

What are the legal aspects of consent?

Consent is obtained from someone with ‘parental responsibility’ and involves both communication and understanding by the parent. If the parents are not married, consent is obtained from the mother as default. The father can provide valid consent only if he is named on the birth certificate, or if parents are legally married.

Will there be times when you will perform procedures and make decisions about my baby without my knowledge and agreement?

In most situations, we will always discuss your baby’s care with you before proceeding. However, there may be rare occasions when we need to act immediately without waiting for your agreement and informing you:

• During medical emergencies when your baby needs urgent treatment that cannot be delayed
• When you are temporarily unavailable, and we cannot reach you quickly enough
• Upon initial admission when your baby may need immediate stabilization

In these situations, we will always:

• Make decisions based solely on what is best for your baby’s health and safety
• Contact you as soon as possible to explain what has been done and why
• Provide you with full information about your baby’s condition once they are stable

Please be assured that emergency situations are uncommon. Whenever possible, we prioritise keeping you fully informed and involved in all decisions about your baby’s care.

Our goal is to work as partners with you in your baby’s care while ensuring they receive the urgent medical attention they need when every moment counts.

What if I do not agree with the NICU staff recommendations and advice?

If there is a disagreement about what is recommended, we will respect your opinion and try to work out another plan. You may go to the Patient Advice and Liaison Services (PALS) for advice or visit the BLISS website www.support.bliss.org.uk

Do I need to give consent for everything that happens to my baby?

Our neonatal doctors use national guidance for the consent required from the British Association of Perinatal Medicine which states that it will not usually be necessary to document consent to routine and low risk procedures. In an emergency if consent cannot be obtained treatment may lawfully be started if clinicians believe it to be in the child’s best interests.

Therefore, when you have left the baby in our care, you agree to routine and low risk procedures such as feeding your baby, taking bloods for routine/basic tests, or conducting x rays/scans where necessary.

On NICU, we provide lots of routine care for your baby.

‘Routine’ care involves many procedures and treatments which are not routine elsewhere, but which are necessary for your baby at that time. We would ask you to give us permissions to perform these routine procedures when your baby needs them, even if you are not available, so that your baby’s care can continue.

What are the routine care procedures my baby may receive in NICU?

• Monitoring
• Blood tests
• Intravenous infusions
• Medications
• Naso/orogastric tubes (feeding tubes)
• Feeding
• Sucrose
• Xray’s or ultrasounds
• Phototherapy
• Sharing information and the use of the Electronic Patient Record
• Clinical examination and assessments by doctors and nurses
• Insertion of invasive lines and breathing tubes
• Screening
• PKU
• Social Care referrals
• Referrals to other healthcare professionals
• Nappy Care
• CFM, cooling
• Resuscitation
• Photos of baby
• Weighing baby
• Gene Drive
• Phone calls/updates to relevant departments/Cot Bureau
• Blood transfusion
• Other blood products

There are some non-routine procedures and medications that we would always discuss with you before starting. These are:

1. Lumbar Puncture
2. Steroids
3. PDA closure medication
4. Exchange transfusion

Please see description of each of the procedures below.

Routine Procedures/Treatments

Monitoring

To ensure your baby is well and to direct the nurses and doctors in his/her care it is routine practice to monitor your baby’s condition. This may be the temperature, the heart rate, the breathing rate, and the oxygen saturation levels (percentage of oxygen carried in the baby’s blood). These monitors are sensitive and alarms will sound to alert us to changes in your baby’s condition. However, they often sound when there are no concerns (for example when the baby moves). Please ask the nurses and doctors to discuss with you what are normal readings for your baby and how these will change as your baby gets older and stronger. We will remove the monitors as soon as they are not needed.

Blood tests

When babies are unwell, samples of blood will be taken to check for things such an infection, anaemia, blood sugar, blood gases and jaundice levels. We always use the smallest amount of blood possible, and usually take this from a heel prick, arterial line, or fine needle into a vein. We can give baby sucrose or EBM for pain relief for these procedures. The doctors and nurses will discuss the reasons for the various tests we do and the results as these become available.

Intravenous infusions (drips)

All babies need a specific number of fluids each day to stay healthy and hydrated. If your baby cannot get enough fluids through feeding alone, we will provide additional fluids through an intravenous (IV) line.

How we provide fluids:

• Fluids are given through a thin tube in the hands or feet, called an IV line or through a special line placed in the umbilical cord (umbilical line)
• The fluids come from a sterile bag and flow through tubing directly into your baby’s bloodstream
• We use the same IV line to give antibiotics and other medications when needed

This fluid support helps ensure your baby stays properly hydrated while they are unable to take in enough fluids through feeding. The IV line is a safe and standard way to provide the nutrition and hydration your baby needs during their recovery.

Medications

There are several medications that may be necessary to help your baby recover or protect them from complications that may occur. Some of these could be antibiotics, vitamins, painkillers, sedation, medicines used in emergencies or to help your baby breathe easier.

During your baby’s stay in the NICU, we may need to give them various medications to help them recover and prevent complications. These medications serve different purposes:

Types of medications we may use:

• Antibiotics - to prevent or treat infections
• Vitamin K to prevent life-threatening bleeding disorders as babies admitted to NICU are more at risk from developing these
• Vitamins - to support healthy growth and development
• Nutritional supplement such as fortifier to help baby’s growth and bone development
• A mixture of good bacteria called Labinic which helps protect your baby’s gut from infection and helps the gut to work properly
• Anti-reflux medication such as Gaviscon, thickener and omeprazole if your baby is showing significant signs of reflux
• Pain relief medications - to keep your baby comfortable
• Sedatives - to help your baby stay calm during procedures or treatments
• Emergency medications - for urgent medical situations
• Breathing support medications - to help your baby breathe more easily

All medications are carefully chosen based on your baby’s specific needs and condition. We will always explain what medications we are giving, why they are necessary, and how they will help your baby’s recovery.

If you have any questions about the medications your baby is receiving, please don’t hesitate to ask our medical team. We want you to understand every aspect of your baby’s care.

Naso/orogastric tubes (feeding tubes)

If your baby is unable to feed properly because they are too unwell or born too early, we may wish to feed him/her by a plastic tube. This goes to the stomach from the mouth/nose. We can then feed them using your breast milk or formula milk. We will teach you how to do this for your baby too.

Feeding

We will ask you how you want to feed your baby.

If you wish to breast-feed, then we have facilities for you to express and store your milk if your baby is unable to feed. In some cases, we may have to give your baby formula milk to supplement your breast milk or donor EBM if your baby is suitable. We will ask your permission for this.

Sucrose

We use sucrose for pain relief for small procedures such as blood taking.

X-rays or Ultrasound

We can perform these tests right at your baby’s bedside using portable machines, so your baby doesn’t need to be moved.

X-rays help us:

• Check your baby’s lungs and heart (chest X-rays)
• Look at the bowel (and stomach abdominal X-rays)
• Verify the correct placement of feeding tubes, breathing tubes, or IV lines

We use the lowest possible amount of radiation and only perform X-rays when medically necessary for your baby’s care.

Ultrasounds:

• Use sound waves instead of radiation, making them completely safe
• Can examine your baby’s brain (head scans), heart, or kidneys and lungs
• Are performed by doctors or specialised technicians

Phototherapy

Some babies need special blue lights to treat high levels of bilirubin in their blood. Bilirubin is a yellow substance that is naturally produced when red blood cells break down. While adult livers easily process bilirubin, babies’ livers sometimes need extra help.

During phototherapy:

• Your baby will wear protective eye goggles
• They will wear only a diaper to expose as much skin as possible to the lights
• We will monitor bilirubin levels regularly
• Treatment continues until bilirubin levels return to safe ranges

All these procedures are standard, safe treatments that help us monitor and care for your baby effectively.

Sharing information and the EPR

Your baby’s information about their care and stay on NICU is collected alongside other babies receiving neonatal care in the region and country. This information is confidential and anonymous and is automatically collected by the Electronic Record we use on the unit 'Badgernet'. This data helps to improve the care we provide for babies in the future.

Clinical examination and assessments by doctors and nurses

Every day your baby will be reviewed and sometimes examined from top to toe by a doctor and the nurse to check how your baby is doing. They will listen to their chest for their breathing and to their heart. They will check your baby’s tummy and, in their nappy, to see if they have passed urine and had their bowels open.

Insertion of invasive lines and tubes

When your baby comes to NICU, they may need a line inserting into their umbilicus to give them specialised fluids called TPN which give them all the nutrients, vitamins, and fats they need to develop. The umbilicus has a big vein and artery which are useful to use for inserting lines into. If they cannot get a line into the baby’s umbilicus, they may try to put a ‘long line’ into a bigger vein on the baby’s arm or leg for fluid or medicines. Sometimes your baby may need a line into the artery of the umbilicus to help monitor your baby’s blood pressure and take blood samples from so that we don’t have to prick their heels for blood tests.

There are lots of different tubes that may be used to help your baby. For example, a tube to help them pass urine, or a tube in their chest to help with breathing if they have a collapsed lung. Some babies require a ventilator tube inserting into their mouth to help them with their breathing. We remove these tubes once your baby is well enough to not need these anymore.

Screening

On NICU we will screen your baby for infection by taking blood to send off to test for any infections. This may happen multiple times during your baby’s stay if they become more poorly and will be started on antibiotics to help fight any infection.

Other screening tests that will be carried out on NICU is a newborn hearing screen before your baby gets discharged to check that your baby’s ears and their hearing responses.

Another screening test that will be carried out on NICU if your baby is born at less than 32 weeks gestation is a Retinopathy of Prematurity (ROP) screen to check your baby’s eye development. We have a specialist eye nurse who will look at your baby’s eyes every week or fortnight with a special camera to check your baby’s eyes are developing well as they grow.

Newborn Blood Spot Screening (PKU)

All babies will have a newborn blood spot test done on day 5 of life regardless of if they have been on NICU or not. On NICU we will do a blood spot test on the first day of life/when they are admitted to NICU and if they are born very early (less than 32 weeks gestation) then we will do another blood spot test on day 29 of life. The blood spot will test 9 different genetic conditions: Cystic Fibrosis (CF), Sickle Cell Disease (SCD), Congenital Hypothyroidism (CHT), Phenylketonuria (PKU), medium-chain acyl-CoA dehydrogenase deficiency (MCADD). Maple syrup urine disease (MSUD), Isovaleric acidaemia (IVA), Glutaric aciduria type 1 (GAU) and Homocystinuria (HCU). For more information on these please see the parent leaflets on the NICU Padlet.

Social Care referrals

Our priority is your baby’s and family’s safety whilst they are in NICU. We regularly liaise with other professionals and services such as health visitors/community workers and social workers. We will sometimes refer families to social care for extra support.

When babies have a long stay in hospital (over 85 days) we routinely refer to social care informing them of your baby’s long stay and making other professionals such as your health visitor aware that your baby remains in hospital and so they can provide extra support to you.

Referrals to other health care professionals

When babies are born early their skin has not fully developed and is very thin and fragile. Sometimes when the skin is damaged from inserting cannulas, machines pressing on baby’s skin, or from birth we will take photos of the wound/skin damage and refer to tissue viability to ensure we are promoting the best healing of the skin. We will monitor it closely with daily photos for a record of the skins condition that is kept on baby’s Badger notes.

Some babies need help with feeding by bottle or breast. When babies struggle to feed, we refer them to our speech and language therapist (SALT) who can assess how well your baby can suck and swallow milk and give advice on how we can help your baby to learn to suck and swallow safely.

There may be other local specialities that we may refer to, to help your baby. For example, Occupational therapist, Physiotherapists, Infant Feeding or Dietician. We will discuss these roles to you and the benefits of them being part of your baby’s journey.

Nappy care

Your baby will always have a nappy on, and we will need you to provide cotton wool balls and nappies for your baby during their stay on NICU. When your baby is in an incubator, we use sterile water and cotton wool balls to clean your baby’s bottom. When they are in a cot you may provide wipes to clean your baby. We will change your baby’s nappy every 6-12hours depending on how premature your baby is, to promote sleep and to reduce stress for your baby.

CFM/Cooling

If your baby had a difficult birth or experienced a lack of oxygen to the brain during birth, we may use a special brain monitor called CFM (Cerebral Function Monitor) which helps us to decide if cooling treatment call therapeutic hypothermia is required.
This treatment has been shown to significantly improve outcomes for babies who have experienced oxygen deprivation at birth. We will keep you informed throughout the entire process and explain all test results.

This involves:

• Placing five small, thin wires on your baby’s scalp
• Continuously monitoring brain activity
• Helping doctors determine the best treatment approach

Cooling involves:

• Carefully lowers your baby’s body temperature to 33.5°C (about 92°F)
• Uses a special cooling mattress
• Help protect the brain from further damage
• Continues for 72 hours

After cooling:

• We gradually warm your baby back to normal temperature (36.5°C/97.7°F)
• This warming process takes 8-12 hours
• We closely monitor for any signs of brain injury throughout

Additional tests:

• MRI scan - performed after treatment to check for any brain injury
• EEG (electroencephalogram) - electrical brain wave testing to further assess brain function

Resuscitation

When babies become critically ill, they may need immediate life- saving treatment called resuscitation. This involves several urgent medical interventions to support their vital functions.

What resuscitation may include:

Airway and Breathing Support:

• Inserting a breathing tube (endotracheal tube) to secure the airway
• Providing oxygen or mechanical ventilation to help your baby breathe
• Clearing any fluid or blockages from the airway

Heart and Circulation Support:

• Chest compressions to help the heart pump blood effectively
• Medications to support heart function and maintain proper heart rhythm
• Drugs to help restart the heart if it has stopped
• Treatments to maintain adequate blood pressure and circulation

Additional Support:

• Intravenous fluids to maintain blood volume
• Emergency medications delivered through IV lines or directly into bones
• Continuous monitoring of heart rate, breathing, and oxygen levels
• Temperature management to prevent further complications

Our approach:

• A specialised team responds immediately to any emergency
• We work quickly and systematically through established protocols
• Every team member has specific roles to ensure efficient care
• We will keep you informed about what is happening and why

While resuscitation can be frightening to witness or hear about, our medical team is highly trained in these procedures. We only use these interventions when they are essential to save your baby’s life or prevent serious complications.

We will always explain what happened during any resuscitation and discuss your baby’s condition and care plan afterward.

Photos of baby

You can take as many photos and videos of your baby as you want just, please ensure your phone is on silent and with no flash on when taking them so it does not startle the baby. If you cannot visit your baby or would like to see a picture of them from home, then the nurses can put a picture/video of your baby on the Badgernet app that your maternity notes are on with a little message.

Weighing your baby

Your baby may be weighed on admission and if this is straight after birth then this will be recorded as the birth weight. We weigh babies on NICU every Wednesday and Sunday either in the incubator or we will take your baby out of the incubator and place them on the scales. We aim to weigh your baby when you are on the unit with your baby so that you can be involved but this may not always be possible. This weight is then plotted onto a chart in Badger so the medical and dietician team can monitor your baby’s weight gain and make changes to their feeds where necessary to make them grow better. We know that babies who grow better do better in their development and general health.

Gene drive

When your baby is admitted to NICU, we take a swab of their mouth which tests to see if they can have one of our commonly used antibiotics called Gentamicin or not. It detects a gene that if present means that your baby is at risk of hearing loss if given this antibiotic.

Phone calls/updates to relevant departments/Cot bureau

You can call the unit for an update on your baby any time day and night. Sometimes we will call other hospitals or transport teams to share information about your baby if they need to be transferred to another hospital. We will always inform you if this is going to happen.

Blood Transfusion

Sometimes your baby may require an emergency blood transfusion. A blood transfusion is used to make your baby feel less tired, short of breath and have fewer desaturations.

Other Blood Products

There are different blood products babies can have, for example platelets or plasma to help them feel better and stronger. These are usually given if your baby is very unwell and showing signs of bleeding or the levels of cells and proteins that help to stop bleeding are very low.

Non-Routine Procedures/Treatments

These will be discussed with yourselves prior to them being started or carried out.

1. Lumbar Puncture

It may be necessary to insert a small needle into the back of your baby to check that there is no infection in the brain and to help the medical team decide how long to treat an infection with antibiotics. This procedure will be discussed with you before we go ahead with this.

2. Steroids

Sometimes steroids are needed to be given to your baby to help their breathing and reduce the amount of breathing support they require. The risks and benefits of this medicine will be discussed with you before a course is started.

3. Exchange Transfusion

This procedure is required if the jaundice levels in your baby are dangerously high and may cause damage to their brain. The procedure will be explained to you by the medical team, and you will be asked to give written consent.

4. PDA closure medicine

A PDA means that a tube is still open between your baby’s lungs and heart, and medicine such as paracetamol or ibuprofen will be used to close it.
 
If you want any more information about anything listed here, please ask your nurse, doctor or look at the NICU Padlet.

Please use the Padlet QR code here.