Having a premature or sick baby is often a frightening and overwhelming experience. You may experience a wide variety of feelings and emotions, all of which are completely normal at such a stressful time. Neonatal and maternity staff understand the difficulties families face, and will provide a range of advice, support and information to help you, your family and your baby.
If your pregnancy has been complicated and your baby is expected to need neonatal care it may be possible to meet some of the neonatal staff, see the neonatal unit and receive verbal and written information before your baby is born. Many parents find this sort of preparation helpful. Often you will meet with a neonatal doctor or nurse practitioner before birth, who will talk to you about the care your baby will receive. If this is not offered to you, ask the midwife caring for you to arrange this.
When your baby is born there may be extra nurses and doctors present to provide the care your baby needs. They will concentrate on your baby, but whenever possible will talk to you about what is happening, and you will be able to see your baby before transfer to the Neonatal Unit.
When you see your baby for the first time on the Neonatal Unit you may be shocked. Your baby may be surrounded by medical equipment, it can be bright and noisy and your baby may be in an incubator with lots of leads and lines attached. This equipment is designed to help your baby breathe, keep your baby warm, and alert staff if there is a problem.
You may feel guilty that your baby is premature or ill, as if it’s your fault, but it is unfair and unhelpful to blame yourself or your partner. Babies can be born early or ill for a range of reasons, and generally these cannot be prevented.
In addition to guilt and anger, you may also feel grief and loss, for the pregnancy and birth experience you expected to have. You are likely to be anxious about your baby’s health and treatment, and it is especially difficult when you are separated from your baby. In many ways this is an emotional time, but it is important to celebrate your baby’s birth and welcome your baby into your family.
If your baby is very ill, your family and friends are also likely to be worried. It can be difficult to explain what’s happening to lots of different people, so you may want to relay information to one key person, and ask them to keep everyone else informed. Please remember due to confidentiality we are only able to provide information to parents, unless there are unusual circumstances. Family members are sometimes offended when we are unable to give them information.
Parents are granted open access to the neonatal unit unless this is not in their baby’s best interests. You may be asked to leave your baby’s bedside at certain times, normally for confidentiality or safety reasons, but staff will aim to minimise this. We appreciate that for parents the support of family and friends is important. However, the care of your baby, protecting your baby’s sleep, and reducing the risk of infection is also important, so all units have visiting policies in place. In certain circumstances there can be some flexibility in the policy for example if there are no grandparents living locally, or the baby is receiving palliative care. Please talk to the nurse in charge of the unit if you have any questions about visiting.
The nurses and doctors will keep you updated with your baby’s care, treatment and progress regularly. This can be done when you spend time with your baby, on the daily ward round, but also when you telephone the Unit. You will receive lots of written information, and you may find the amount of information you receive difficult to take in. It is really important that you understand your baby’s treatment and are able to make decisions, so please ask as many questions as you need, particularly if we use words you don’t understand. You may want to write your questions down, as this can help you remember them. We understand that you are under stress, and we are here to help you and your family, as well as care for your baby.
There is some very good information produced by charities such as Bliss, Tommy’s and Best Beginnings. Some of this information is written, mostly in English but some information is available in other languages. All of this information is free of charge and should be available on the neonatal unit. You may find that you receive a package of important information the first time you see your baby on the neonatal unit. Please read this as soon as you are able as it will answer many of the questions you have.
Bliss has produced a series of videos to help parents (view here), and the Small Wonders DVD is available on every unit (view here). This DVD follows families’ journeys from before birth until after their babies have gone home from hospital and contains lots of useful information about different aspects of your baby’s care.
If English is not your first language and you are finding it difficult to understand what is happening to your baby please let the staff know as an interpreter can be organised. Sometimes the interpreter will visit the neonatal unit, but often a special telephone system called Language Line is used.
The nurses caring for your baby are a good source of support, as are your partner, family and friends. You may also wish to talk to your community midwife, health visitor or GP.
Sometimes you may find it easier to talk to someone who doesn’t know you; some Units have a counsellor or psychologist you can meet with. Every hospital has a chaplaincy team who can provide a listening ear, regardless of your religious beliefs, or even if you don’t have any. Some Units have meetings where you can meet other families, talk about your experiences, support each other, or even just have a cup of tea and a chat.
Bliss, the national charity for babies born too soon, too small and too sick has lots of ways to help families. Bliss has a website www.bliss.org.uk with lots of helpful information and an online messageboard where you can talk to other parents. There is also a free help and advice line open from 9am to 9pm Monday to Friday. The helpline number is 0500 618140. The helpline uses the Language Line translation service so if you don’t speak English you can call leaving your name, phone number and the language you speak and they will call you back. You can also email Bliss on hello@bliss.org.uk at anytime, or find Bliss on Facebook or Twitter. If you need more support Bliss can also arrange counselling for you.
There is a Bliss Nurse based within the Southern West Midlands Maternity and Newborn Network. Bliss Nurses provide information and advice, practical and emotional support to families. Bliss nurses can help you to get involved in your baby’s care by supporting expressing breast milk, skin-skin contact and breastfeeding. The Bliss nurse can signpost you to support groups in your area.
Many units have Bliss volunteers, who are there to talk to parents and provide information and support. Bliss Buddies have themselves had a baby on the neonatal unit, so understand exactly how you are feeling. Bliss Champions are trained by Bliss to support families and can provide you with lots of helpful information.
Taking your baby home is a happy time but it can also be stressful when you no longer have the support of the neonatal nurses. You will find that there are support groups for families whose baby has been on the neonatal unit. Some of these groups are organised by nurses from the neonatal unit, others by Bliss volunteers. You should find information about support after discharge on your unit, or by asking the nurses.
It is very difficult to be separated from your baby, especially if you are discharged and have to leave your baby on the neonatal unit. The incubator may also feel like a physical barrier between you and your baby.
Family-centred care is an important part of the philosophy of care for all units; staff recognise that they are caring for the whole family, even though the baby’s care needs take priority. We understand parents’ feelings, and will support and encourage you to become involved in care and decision-making and develop a strong bond with your baby.
Talking softly, singing and reading are all good ways of interacting with your baby. Your baby will recognise your voice from hearing it inside the womb. Your baby will also recognise your scent and the smell of breast milk. Mothers may wish to wear a small piece of fabric next to their skin and place it next to their baby as this scent is safe and comforting and helps babies feel secure. Smell is an important part of the bonding process so remember not to wear strong perfumes etc, and seek advice from staff if you smoke.
You may wish to take an item of clothing that your baby has worn home, as this along with a photo of your baby can help the flow of breast milk when expressing.
In some units you can personalise your baby’s bed space with a photo, small toy or religious text. A small soft toy can useful for you baby to snuggle up to. Ideally toys should be washed regularly as they may gather dust. If you have other children you may want to give them a gift from the baby or vice versa. Encourage them to draw pictures for their new brother or sister to make them feel involved.
You may want to take lots of photos as your baby progresses; using the same object in each photo can remind you how quickly your baby has grown, even if it doesn’t seem that way. Normally a photo will be taken of your baby on admission, and nurses may take other photos at special times. Please make sure you don’t take photos of any baby other than your own, and if staff will be in the picture, get their permission first.
You will normally be asked to supply nappies, cotton wool etc. for your baby. You may want to purchase some clothes or a blanket so your baby has their own things. A big, thick, dark blanket can be used to cover the incubator to protect your baby from light; a smaller soft blanket can be good for kangaroo care. If you have your own baby clothes please label them, the unit will be unable to accept responsibility if they go missing. Remember that babies grow quickly, so you may not want to buy many very small clothes as these can be expensive. You can find premature baby clothes online, and Asda have recently launched a new range. The charity Pop n Grow will send a suitable outfit for your baby to the neonatal unit. You can contact them on their website (view here), on Facebook or by phone.
Some units provide keepsakes such as patchwork quilts, and you may want to start your own memory box with items your baby has used such as probes and phototherapy masks. Some parents find keeping a diary is a good strategy for dealing with the neonatal journey, and there are apps you can use as well as a paper diary.
Some units provide parent diaries. You can write about your baby’s care, as there is so much to remember, your feelings, whatever works best for you. If you wish, the nurses will write little stories about your baby’s day, you may appreciate this if you are unable to see your baby as often as you would like.
Developmental care is part of your baby’s medical and nursing care. It aims to reduce the stress experienced by you and your baby during your neonatal journey. It helps to achieve the best possible developmental outcome for your baby.
An important aspect of developmental care is seeing your baby as an individual and adapting care to your baby’s needs. Sleep is very important for the growth and development of your baby’s brain so we promote sleep by reducing light and noise, and positioning your baby comfortably. Many units have a rest time (sometimes called quiet time) where no routine care is given to allow your baby to rest undisturbed. Careful positioning allows your baby to comfort themselves, develop movement and avoid postural problems. We also move and care for your baby gently; paying attention to behavioural cues to ensure your baby experiences as little distress as possible.
You should expect to see incubators and cots covered until your baby is close to term; with nests, gel pillows and boundaries to aid positioning.
To help the development of feeding skills and promote bonding we encourage Kangaroo care (skin-skin contact) and breastfeeding. Pain assessment and management is also part of your baby’s developmental care and there are many ways to help your baby including non-nutritive sucking, use of breast milk and sucrose (sweet solution).
Developmental care is family-centred so you are welcome to be involved these aspects of your baby’s care, including providing comfort during painful procedures if you wish.
Every unit has at least one nurse responsible for developmental care, who will be more than happy to answer your questions.
You may feel helpless and think you cannot do anything for your baby but there are many really important things you can do. Nurses and doctors will encourage and support you to be involved as much or as little as you feel able.
Some of the ways you can be involved in your baby’s care are described in the sections below.
If you baby is very early or ill, it may not be possible to have cuddles or skin-skin contact straight away. However parental touch can be very calming and soothing when a baby is unsettled. It is a natural response to stroke your baby’s body but many premature or ill babies find this type of touch irritating or overwhelming. Still, firm, touch is enjoyed by most babies; this is often called comfort or containment holding and involves curling one hand around your baby’s head, cupping the other hand around your baby’s feet, or placing a hand on your baby’s tummy. Ask your nurse to help you.
Babies also like to grasp your finger, and get comfort from touching parts of their own body including placing their hands or feet together, touching their face or head. Before touching your baby you should remove your jewellery/watch, wash and gel your hands. Make sure your hands are warm. The best time to touch your baby is if he or she is awake, quality sleep is very important, so it is better to not disturb a sleeping baby. It is a good idea to prepare your baby for touch by speaking softly. Try to breathe deeply and relax so your baby does not pick up any stress or anxiety you may be feeling.
By watching your baby carefully you will begin to understand your baby’s behaviour, the nurses can help you with this, and you can also read the Bliss booklet “Look at me I’m talking to you”.
When your baby is able to be held, the staff will encourage you to do this. One of the best ways to hold your baby is skin-skin, which has many more benefits than holding your baby wrapped in blankets.
This is often called Kangaroo Care, and involves holding your baby on your chest, naked apart from a nappy. Some babies will need a hat to keep warm. It helps to have a loose top, or one which opens at the front as this makes it easier to position your baby. Blankets will be placed around you, or you could use a specially designed sling. A screen can be used to give you privacy. You may want to hold a small mirror so you can easily see your baby’s face.
Moms, dads and siblings can be Kangaroo carers. Kangaroo care has many benefits for mothers, fathers and babies. It helps with breast milk supply and feeding, bonding and attachment, and can reduce parental anxiety. Skin-skin contact promotes sleep and weight gain, regulates the baby’s temperature, heart rate and breathing, and provides a positive sensory experience as your baby can feel and smell your skin.
There is no time limit to how long you can hold your baby in this position; at least an hour is beneficial, but your baby can stay skin-skin until he/she shows signs they are no longer enjoying the experience.
For more information watch the film on the Small Wonders DVD (view here) and read the Bliss booklet Skin-Skin with your premature baby (view here).
When you feel ready you may want to become involved in your baby’s personal care. You may be happy to start straightaway but some parents are anxious about hurting their baby and disturbing medical equipment. The nurses will help and guide you; your baby is probably more robust than you think. It is important to handle your baby gently and carefully, paying attention to his/her behaviour, and slowing down when your baby needs to rest. Perhaps you might like to support and comfort your baby while the nurse changes the nappy, and gradually increase how much do, until you are confident and happy with changing the nappy yourself.
For lots of parents mouth-care is the first thing they do for their baby. When cleaning your baby’s mouth, try to use breast milk as it is antibacterial, smells and tastes nice. As your baby grows it gets easier to provide care. When your baby can manage temperature regulation and is getting ready to go home you may wish to try a bath. A slightly different technique called swaddled bathing is used to reduce the stress of the bath for your baby.
As this is such a special time for parents the nurses will often demonstrate with a doll, so you are able to bathe your baby for the first time. If you would prefer not to do this, then the nurses will be happy to bath your baby and support you until you feel comfortable doing it yourself. Make sure you take lots of pictures!
You may not have decided how to feed your baby yet, or you may have planned to feed your baby with artificial milk. If your baby has been born early, very small, very ill, or with other medical problems you may be asked to consider expressing your breast milk. This does not mean you are obligated to breast feed, but that breast milk would be the best milk for your baby at the moment, giving your baby the best possible start. Nurses and doctors view your breast milk as medicine; it has lots of benefits for your baby’s health, including their immune system, bowel and brain. Even if your baby is not being fed yet, breast milk can be used for cleaning your baby’s mouth and pain relief. You will start by hand expressing your colostrum within 6 hours of birth, and then after a few days move on to using a hospital-grade breast pump. Midwives, nurses and feeding advisors can teach you how to hand express, and there is a very good film showing a mother hand expressing in the Small Wonders DVD (view here). Further information is available on the Bliss website and in the booklet The Best Start: A guide to expressing and breastfeeding your premature baby (view here).
Breast pumps are normally available on the postnatal ward and neonatal unit, and many units have pumps you can borrow to use at home. You will need to express 8-10 times in 24 hours to establish your milk supply, including at night. This is sometimes difficult when you are tired but is really important as one of the milk-producing hormones prolactin is at its highest level at night. Don’t worry if you only get a few drops to begin with, every drop is precious. Your milk supply will increase with time, and help and advice is available if you experience any problems.
Babies are normally able to coordinate breathing, sucking and swallowing from 34 weeks. When your baby shows signs that they are ready to practice feeding you will be encouraged to try your baby at the breast. This can occur from about 32 weeks corrected gestational age, but may happen slightly earlier for some babies. Skin-skin contact is a good way of seeing if your baby is ready to try breastfeeding as the smell of breast milk may stimulate feeding behaviours such as rooting and licking. Your baby may not latch well at first, and is likely to need tube-feeds until feeding is well established, but every breastfeed helps your baby learn this skill. You may start with one or two breastfeeds per day, and this will increase as your baby breastfeeds more effectively. If you wish to breastfeed bottles will not be given to your baby without your permission, and they should not be introduced too early.
When your baby is nearly ready to go home you may wish to stay overnight in the hospital to allow you to care fully for your baby with the support of staff. This is called “rooming in” and may happen in a room on, or near the neonatal unit, or on a transitional care unit.
It may seem scary but many parents learn to feed their baby this way. There are some safety precautions that are followed, such as making sure the tube is in your baby’s stomach, but most parents quickly grow in confidence. Units have different policies and teaching packages for parents, but some babies will go home partly tube-fed. This is sometimes for medical reasons, but for many families this is a good option, babies are able to learn to feed from the breast or bottle at their own pace, in their own home. Not every unit currently discharges babies who are not fully breast or bottle-fed, but it can help you to take your baby home earlier. Using a pacifier (dummy) during tube-feeds when your baby is awake can help to speed up development of the sucking reflex.
When your baby starts to display signs of readiness to bottle-feed you will be supported to do this by nursing staff. Because feeding from a bottle is different to breast-feeding, this may happen at a slightly later age, when your baby requires only a small amount of help with breathing.
Learning to feed safely by bottle is an important skill; your baby should find feeding pleasurable. We encourage you to be present for as many feeds as possible to give your baby consistency. We recommend that only the main caregivers such as mom and dad feed the baby to promote bonding and attachment.
Babies born prematurely, or with certain medical problems will be fed in a special elevated side-lying position. The babies are normally swaddled lightly to improve their muscle tone. Research has shown that babies fed this way have better coordination, a more stable heart rate and improved oxygen levels.
Your baby should be offered a bottle when awake, alert and rooting. Research shows that babies who are fed in this way, a cue-based approach, learn the skills needed to bottle-feed more quickly. Your baby may tire very easily at first, or show signs that they are stressed. It is important to notice these signs, stop offering the bottle, and give the rest of the milk by tube. This helps to prevent long-term feeding problems.
As your baby practices bottle-feeding their skills will develop. If you have any worries about your baby’s feeding skills please talk to the nurses as assessment by a Speech and Language Therapist can be organised.
You may be offered the opportunity to “room in” with your baby before you go home, so you can experience providing all the care for your baby with the support of staff.