Support for parents

It is important that you and your baby get to know each other. You may feel frightened to touch your baby at first, but we will support you in learning how to do this until you feel confident. ‘Positive touch’ is a gentle way of helping you connect and communicate with your baby.

The type of touch must be adapted to your baby’s response, their medical condition and their degree of prematurity. The art of positive touch is being able to tune into your baby’s needs and to recognise their signals given in the form of reactions and cues.

Often the natural instinct is to lightly stroke your baby with your fingertips. However this is often not tolerated by fragile infants. Therefore, still or containment holds are a way of providing stability for your baby and will help you to gain confidence, especially in the early days when your baby may be medically unstable.

Even small babies can benefit from close contact and the nurse may suggest you hold your baby in the ‘kangaroo-type’ position by tucking your baby inside your top away from too much light and noise stimulation. This helps very young babies to relax and can also assist in breastfeeding. Kangaroo care also helps to form a bond between parent and baby. The nurses will support you whilst you are holding your baby.

Please ask the nurses for more detailed information regarding developmental care.

Breast milk

Mother’s breast milk is the best food a baby can have – it contains important ingredients that encourage growth and help fight infection. The mother of a premature baby produces appropriate milk for her baby. Even if your baby needs to be fed by a drip or by tube at first, he or she should still be able to breastfeed eventually. We encourage all mothers to express breast milk for their baby, as it clearly reduces the risk of serious infections and bowel problems.

You may find it difficult to express milk at first, especially if you are worried about your baby, but it’s important to do this as soon as you can. Your milk can be stored in the unit’s freezer until your baby needs it.

Expressed breast milk

Your baby may not be able to suck very well at first, so we would encourage you to express your breast milk until he or she is able to do so. We provide breast pumps for use whilst you are visiting your baby on the unit. Each mother will be given their own pumping set, which you may keep after your baby has been discharged. Breast pumps may be hired from outside companies for home use or you may choose to purchase your own – please speak to the nurse looking after your baby for details.

Pasteurised donor expressed breast milk

You might struggle to produce a certain amount of breast milk at the beginning. Should your child be considered to be at high risk for developing feeding related gut problems, we may consider using donor expressed breast milk. We will ask for your consent before doing so.

Donor expressed breast milk comes from a donor breast milk bank. The milk bank receives expressed breast milk from donors who are recruited on neonatal units. Donors are screened for infection and the breast milk is pasteurised. The benefit of the milk bank is to make donor breast milk available for preterm and sick babies on the Trevor Mann Baby Unit and Special Care Baby Unit when maternal breast milk is not available.

Sucking

Your baby may not be able to suck very well at first, so breast or bottle feeding may be difficult, but as he or she becomes stronger and with practice, this will become easier for both of you. The unit also has a speech and language therapist to support your baby with feeding.

Tube feeding

Until your baby is able to feed orally he or she can be fed through a small tube, which passes through the mouth or nose and down into the stomach.

Bottle-feeding

If you are unable to breast feed or express breast milk, manufactured milks are available on the unit. If your baby is preterm and/or weighs less than 2kg we may use specially formulated milk.

Intravenous feeding

If your baby cannot tolerate milk feeds, it may be necessary for your baby to be fed via a drip. We call this parenteral nutrition (PN).

Non-nutritive sucking (NNS)

The sucking a baby does by reflex, for example on a finger or dummy, is called non-nutritive as the baby is not getting any milk.

If, by 32 weeks corrected gestational age, your baby is tube fed, he or she may need some sucking practice. The best time for your baby to practice non-nutritive sucking is during tube feeds.

If your baby has a good non-nutritive suck, he or she will make the move to oral feeding much easier. Non-nutritive sucking is also important as it will help your baby associate sucking with a full stomach.

Research has shown that other benefits to non-nutritive sucking include increased weight gain, improved digestion of milk and quicker discharge from hospital. It will also provide your baby with a pleasant experience to their face and mouth.

What can parents do to help?

It is ideal if you can make non-nutritive sucking as similar to breast or bottle feeding (nutritive sucking) as possible. You can do this by:

• Holding your baby in the position you would normally use for feeding.
• Encouraging your baby to show a sucking reflex before putting a finger or dummy into the mouth. Your speech and language therapist or nurse can show you how to do this.
• Encouraging your baby to suck for 5–10 minutes at each tube feed during the day when awake. If your baby is asleep and very young however, there is no need to wake him or her for each feed. You don’t need to do this for night-time feeds unless your baby is unsettled. It is good to get your baby used to sleeping through the night if at all possible!
• Your baby might need some special exercises to get him or her sucking as well as possible. If this is the case, your speech and language therapist will guide you on the best exercises to do.

Neonatal patient information leaflets

Premature babies usually go home at, or slightly before, the date they were due to be born. This means that if your baby is born six weeks early, it could be six weeks until he or she goes home. By the time they go home, babies will be feeding well, gaining weight and sleeping in a cot.

The Neonatal Community Nursing Team

The community nursing team provides care to babies and support to their families whilst on our units and then at home after discharge. The team works with nurses and parents shortly after admission to begin to prepare parents and their babies for discharge. This may include teaching parents additional skills including naso-gastric tube feeding and resuscitation.

The team will then visit babies in their homes after discharge to support parents and families in looking after them. They are also able to provide telephone advice. They work alongside health visitors, to whom they will handover care after approximately 4 weeks.

Transferring babies between neonatal units

The Trevor Mann Baby Unit in Brighton is the only Neonatal Intensive Care Unit in Sussex. We are part of the Kent, Surrey and Sussex Neonatal Network. This means that we work together with all Special Care Baby Units in Kent, Surrey and Sussex. Together, we look after as many babies as possible who need intensive care and try to avoid having to transfer them (or their mothers) longer distances to other neonatal intensive care units in London or further afield.

Babies who no longer need intensive care benefit from the less medical, more relaxed environment of a Special Care Baby Unit. This is also true for their parents. Once babies reach this stage of their recovery, it is therefore important for us to transfer them promptly to their local unit.

If you were originally booked to deliver your baby at the Royal Sussex County Hospital (RSCH), then we will usually continue to care for your baby on the Trevor Mann Baby Unit.

If the Princess Royal Hospital (PRH) is your local hospital, then your baby will be transferred to the Special Care Baby Unit there. The same team of consultants will supervise the care of your baby at PRH.

If you were originally booked to deliver your baby at another hospital, then your baby will be transferred to the Special Care Baby Unit there. The medical care of your baby will be handed over to the consultant and nursing team at that hospital.

If your baby has long term medical or surgical needs, then your baby may be transferred to the Royal Alexandra Children’s Hospital when he/she no longer needs intensive care. The care of your baby will be handed over to the Consultant Paediatricians and/or Consultant Paediatric Surgeons as appropriate.

Occasionally, even if you delivered your baby at RSCH, you may be asked to agree to transfer your baby to PRH or another Special Care Baby Unit locally. We will only do this:

• if your baby can be safely looked after in another unit, and
• we would otherwise have to transfer a baby who needs intensive care to London or further afield unnecessarily.

We appreciate that transferring your baby can be stressful but hope you can understand why it is necessary. We undertake to:

• always give you as much warning as possible
• never transfer your baby without discussing it with you
• transfer your baby safely using an appropriate neonatal transport team
• hand over the care of your baby fully and safely

The majority of babies born early will achieve their developmental milestones according to how early they were born. For instance, a baby born two months prematurely may start to sit at eight months of age rather than six months.

Although all babies develop at slightly different rates, most premature babies will catch up with other children by the time they are about two years old. Unfortunately, babies born very early are at risk of developmental delay. By carefully monitoring progress in babies born before 33 weeks, any delays can be identified early so that appropriate help can be provided.

For babies not born prematurely, we will inform you if we recommend follow-up after discharge.

Following discharge, your family health visitor will visit you at home. He or she will be able to answer questions about your baby’s health and development, as well as carry out developmental assessments at key stages.

If your baby is born at 29 weeks or earlier, then when your baby is one year old (according to the expected date of delivery) you will be invited to our special developmental clinics. This will happen again at age two years. If we find any problems during either of these checks we will be able to plan extra care for your baby’s needs.

You can watch a video of some of the babies treated here at the Trevor Mann Baby Unit, and how they have flourished.

The community nursing team provides care to babies and support to their families whilst on our units and then at home after discharge. The team works with nurses and parents shortly after admission to begin to prepare parents and their babies for discharge. This may include teaching parents additional skills including naso-gastric tube feeding and resuscitation.

The team will then visit babies in their homes after discharge to support parents and families in looking after them. They are also able to provide telephone advice. They work alongside health visitors, to whom they will handover care after approximately 4 weeks.

Before your baby is discharged from hospital, you will need to register your baby with your GP. We notify both the health visitor and your GP when your baby goes home so that they are up-to-date with your baby’s progress in case you need advice.

Whilst your baby is in hospital, your health visitor may call or visit you at home to see how you are and to hear how your baby is progressing. If you prefer, your health visitor may visit you and your baby on the unit. Your health visitor will give you details of your local baby clinic.

You need to register your baby’s birth within six weeks. If you are married, either parent can do this. If you are not married and want the baby registered in the father’s name, both parents must attend. Your baby does not need to be registered in the town that they are born.

View more information on the gov.uk website.

Local register offices

Brighton and Hove Register Office
Brighton Town Hall
Bartholomew Square, Brighton BN1 1JA
Book an appointment online or call 01273 292016 to make an appointment

Eastbourne Register Office
Town Hall
Grove Road, Eastbourne BN21 4UG
Call 0345 60 80 198 to make an appointment

Hastings Register Office
Hastings Town Hall
Queens Road, Hastings, TN34 1QR
Call 0345 60 80 198 to make an appointment

Haywards Heath Register Office
Haywards Heath Library
34 Boltro Road, Haywards Heath, RH16 1BN
Book an appointment online or call 01243 642122 to make an appointment

Lewes Register Office
Southover Grange
Southover Road, Lewes BN7 1TP
Call 0345 60 80 198 to make an appointment

Worthing Register Office
Portland House
Richmond Road, Worthing, BN11 1HS
Book an appointment online or call 01243 642122 to make an appointment
01243 642122

“I was 24 weeks pregnant, expecting twins, when I was told I was in labour. The shock was overwhelming and I feared that I would lose them both. I was transferred to Brighton because they had the special care needed for such small babies. Tara Jayne weighed a mere 17oz and Katie Ann, 2lbs 2oz. Katie Ann was expected to pull through, but she didn’t and the grief was unbearable. I felt like I was in a time warp; everyday life was suspended until we all came to terms with her death. Having lost one, we were forever fearful that Tara Jayne would not pull through. She was incredibly tiny, with wires and monitors plugged into her tiny frame and we hoped that she felt no pain. She was 146 days old when we took her home and she weighed a healthy 5lbs. The six months of living in a vacuum have taken their toll on all of us; our two other children are very protective of Tara Jayne. I’m hopeful that my experiences will help other people in similar circumstances to cope during such an emotional time.”

“Our son Lewis was born at 33 weeks and was transferred to the Intensive Care Unit at TMBU. My husband and I arrived in floods of tears and were shell shocked when we first entered, but soon the monitors, wires and alarms became normality. We were advised to expect good days and bad but we weren’t expecting such a roller coaster journey. Lewis was constantly monitored and was making great progress. But, after a week, he deteriorated and was moved back into ICU. Lewis needed immediate attention and was resuscitated by the TMBU staff who provided outstanding medical care and dedication to keep him alive. Over the next few weeks he grew stronger and well enough to come home. We found talking to each other, the other parents and staff hugely beneficial to keeping us strong for Lewis. During our time on the unit, we cried and prayed more than we ever had before – sometimes we cried more on the good days, because every small step of recovery reminded us of the miracle of our little boy. The doctors and nurses who looked after Lewis (and us), were truly inspirational and we will be eternally indebted and grateful to them.”

Not all pregnancies go smoothly. Every year some babies are born prematurely or preterm – that is before 37 completed weeks of pregnancy. Preterm is only used to describe those babies born more than three weeks early. 40 weeks is the ideal time for a baby to spend developing in the womb.

We do not always know why a baby is born preterm, although we do know that the chance of an early birth is higher in some situations, for example, where a woman is carrying a twin or triplet pregnancy.

The outcome for a preterm baby depends largely on how early he or she is born. The overall outcomes for premature babies are good. However, there are risks to being born too early.

Early Birth Association (EBA)

The Early Birth Association is a support group for the parents of premature and sick babies. It is run by a number of parents who have previously had a baby on the unit.

The EBA holds a regular coffee morning on TMBU providing a chance for parents on the unit to meet others and to talk with members of the EBA. Please ask your nurse about the next coffee morning or contact EBA directly.

Parent forum

The neonatal service has a parent forum which meets quarterly. It provides an opportunity for parents who have experienced one or both of our units to help us develop the service and the way in which it operates. The group helps coordinate the parent feedback programme, contributes to the development of parent information available on our units and advises us on new policies and procedures that we introduce.

We welcome any parents who would like to become members of the forum.

For further information, please contact Clare Morfoot on the Trevor Mann Baby Unit, Sue Robinson on the Special Care Baby Unit at Princess Royal Hospital or Ryan Watkins, Consultant Neonatologist.

Ronald McDonald House

Ronald McDonald House Charities support families while their child receives care and treatment by giving them a warm and welcoming place to rest their heads, just a moment away from their child. Contact details:

Sally.gabriel@uk.mcd.com
01273 571507
21 Abbey Road
Brighton, BN2 1HT

www.rmhc.org.uk

Rockinghorse Charity

The Rockinghorse Charity is a vital supporter of TMBU. It raises money for life-saving medical equipment while ensuring that children and babies are treated in an environment better suited to their needs.

Other organisations

• BLISS, national charity for premature and sick babies
• TAMBA, Twins and Multiple Birth Association
• Group B Strep Support
• Contact a Family, for families with disabled children
• Amaze, support group for parents of children with special educational needs or disabilities in Brighton and Hove