We were there...
Parents’ experiences of having a premature baby
B
A copy of this booklet can be downloaded from: www.poppy-project.org.uk/resources
Published by NCT on behalf of the POPPY Project NCT, Alexandra House, Oldham Terrace, London W3 6NH www.nct.org.uk National Childbirth Trust is a registered charity (801395) Š NCT 2009 ISBN: 978-0-9550328-9-X
POPPY was a three-year collaborative research project to identify ways in which information, support and communication with parents of premature babies could be improved. This booklet reflects what parents participating in the research had to say about their experiences. The POPPY Project was funded by the Big Lottery Fund and the following organisations took part: NCT (National Childbirth Trust), Bliss – the special care baby charity, RCN Research Institute, University of Warwick and the National Perinatal Epidemiology Unit, University of Oxford.
www.poppy-project.org.uk
1
Acknowledgements We would like to thank the parents who agreed to be interviewed; the neonatal units and the neonatal nurses involved in the project, Hazel Furze, Jan March, Catriona McIntyre-Beon and Jan Waugh; the POPPY researchers, Sophie Staniszewska, Jo Brett, Maggie Redshaw and Karen Hamilton, members of the POPPY Steering Group and Research Advisory Group, and the contributors to this booklet: Nicola Jones and Lesley Taylor, parent representatives; Mary Newburn and Jane Dennehy, NCT; Sara Carbone and Andy Cole, Bliss. We have recognised in several places that some parents have one baby in neonatal care and others have twins or triplets. However, we mainly refer to ‘your baby’ so that there is less repetition.
2
Introduction This booklet is about the experiences of parents having a premature baby or babies who need to be cared for in a neonatal unit. It focuses on three distinct themes: • • •
parents’ feelings on their journey through the neonatal unit and what may happen at different stages, parents’ needs for support and information, what you can do to increase your involvement with your baby while you are in hospital.
All the parents quoted in We were there were interviewed as part of the POPPY research in England or Scotland, June 2007 - October 2008. They all had one or more premature baby. Minor editing has been done to make the quotes easy to read. Names have been omitted or changed for anonymity. This booklet has been developed particularly for parents with a premature baby, but any parent with a baby in a neonatal unit may find it useful. POPPY recommends that all neonatal units should provide family-centred care. This means that staff: • • •
recognise and value parents as being at the centre of the care process for their baby, respond to parents’ emotional, social and information needs by keeping them updated on their baby’s progress and seeking informed consent for any treatment, show parents how they can care for their baby and encourage them as they gradually become the main carers.
Many neonatal units do involve parents and provide great support, but some are more successful than others. The POPPY Project has revealed that there are often gaps and inconsistencies in parent-centred care, sometimes because of staff shortages. 3
First thoughts The early hours can be overwhelming… A premature birth is a time of intense anxiety for all concerned and the well-being of baby and mother are central to everyone’s efforts and hopes. You may feel quite shocked by the speed of the birth and all the medical activity focused on your baby. If the date of the birth was planned or you had some in-patient antenatal care, you may have been able to visit the neonatal unit in advance. Even so, the reality of an early birth, in highly medicalised circumstances, can be hard to take in. It is most likely your baby or babies will have been taken into neonatal care immediately. As the mum, you may not be well enough to go with your baby straight away. Talking about what you want and how things are going to be managed can help both parents feel more included in events. You may want to find out: • how information about the baby will be given to you, in what form, and when, • whether it is possible to have a photograph.
Making plans in advance If you are still pregnant and know that your baby may need special care, it may help to plan who will go and see the baby or babies in neonatal care. This will give you some reassurance and a sense of control over who sees your baby before you are able to do so.
…it’s a big adjustment to make, so take your time 4
D 7 'At the beginning when he was first born… it was quite scary because we didn't know what was happening.'
'I was completely and utterly shocked.
I was really upset.
I couldn’t understand what was going on. I just wasn’t prepared for it.'
'The one-off twin class was really good, but again it didn’t prepare you as much as it might have done. The information was great – they actually brought down someone from the neonatal unit who spoke to us before these guys were delivered and just explained what would happen and how quickly they would be taken away. That was really good.'
5
Getting close Becoming a parent‌ It can be very hard for new mums to have given birth and be in recovery or on the postnatal ward alone, especially when other mothers have their baby with them. It is worth asking whether you can have a side room. Staff know that early contact with your baby really matters. Usually they do all they can to arrange for you to visit the neonatal unit as soon as possible. Often the dad goes to the neonatal unit with the baby after the birth. If you have the chance to do this, ask if you can take photographs to show to your partner. The sound of your voice It can be quite shocking to see your baby in an incubator. S/he may have monitors attached, and possibly an intravenous drip. To make a connection, you may find it helpful to talk to your baby quietly. Before you can touch your baby you will need to ensure you have followed the hygiene procedures in your neonatal unit. It is important that the risk of infection is avoided as far as possible. Very tiny or poorly babies may find touch stressful, so you will be guided by nursing or medical staff about when and how to touch your baby. Understanding the reasons for this, and having some idea about how and when you will be able to hold your baby, may help you through this time. Find out whether you can have your meals delivered Ask whether you can have your meals delivered to the neonatal unit. This could increase the amount of time you can spend with your baby.
‌in difficult circumstances 6
G
'Initially I was in a ward and everybody else had their new babies round them, but I didn’t have mine.'
'Obviously there’s not a lot you can do… but it was a big shock when he was
in special care and I was put into a ward with others who all had their babies. I thought that was awful.'
'I couldn’t get out of bed, so I had to keep asking....
7 7
"...How is he?
...What’s going on?" '
'At the end of the day, I’d just had a baby and I wanted to be with him.' 7
Feeding your baby Making informed choices… You will need to discuss the feeding options for your particular circumstances. Mother’s milk The milk produced in the first few days after the birth (called colostrum) is enriched with fats and minerals to develop the baby’s immune system and promote growth. It is particularly important for premature or poorly babies. Starting to express milk as soon as possible after giving birth will help your baby and help you feel fully involved. However, there may be good reasons why you cannot start expressing, or continue over several weeks. Breastfeeding a pre-term baby can also be challenging. Being involved in feeding your baby is a positive step, whatever food is given. With more than one baby or a sick baby the stress can be enormous, and you will need additional help. Giving birth and becoming a parent makes a major emotional impact, even when there aren’t additional worries. Whatever your circumstances, remember it is early days. Tube feeding Once your baby can take milk, s/he may be fed through a tube in his/her nose or into his/ her stomach. This could be expressed breast milk, formula or breast milk from a milk bank. Ask whether you may help give your baby milk this way. Expressing If you choose to breastfeed, you will most likely need to express and store your breast milk. Expressing as soon as possible after the birth will stimulate your milk supply, though it is possible to start after a delay. You may be able to use the breast pump beside your baby’s incubator, perhaps using screens for privacy. Ask to be shown how to use the pump and store the milk you express. It is easier to express if you have your baby close by. A photograph or something that smells of your baby (clothes or a soft toy) can also help stimulate your milk flow. Don’t be disheartened if you only produce a few drops of breast milk; your supply will build up. Your baby’s stomach is small, so a little goes a long way.
8
…in difficult circumstances.
'It was hard doing the breastfeeding, trying to get her comfortable, but the neonatal nurses were always there,… supporting us, and if I got stuck, they said:
"That’s what we’re here for."'
'I was given the breast pump and I was expressing alright but I wasn’t told how much to expect to produce in the first few days. And my expectations were far too much. I got all upset about it. If I’d been taken through it stage by stage what I should expect - that would have been better.'
'It’s not easy on the unit, not because the facilities aren’t there, but you don’t seem to think of the emotional side of it. I tried to express on the ward in front of her carer but I couldn’t do it. I was in hospital for 10 days and I was ready to give up, but once I got home where I was more relaxed, I was fine to do it.'
'They let us
get involved even though she was so small.
We did the feed, they showed us how to do it and we fed her and changed her.'
9
Skin-to-skin Your baby knows… Skin-to-skin care (or ‘Kangaroo Care’) provides benefits for you and your baby. It involves the baby being placed directly against the parent’s skin, with blankets wrapped round the outside, not between baby and parent. Babies feel secure and content snuggling between their mum’s breasts or lying on their dad’s chest. If your baby is warm and stable, you can stay that way for as long as you want. There is evidence to suggest that skin-to-skin care promotes the baby’s health and well-being. The close contact also helps mothers produce the hormones which stimulate breast milk. Ask staff on your unit about skin-to-skin care. With help, you can give this loving touch from the very early days. Comfort holding Occasionally skin-to-skin care may not be possible – for example, if a baby is unstable or too ill. In these cases, there may be other things you can do instead, like ‘comfort’ or ‘containment holding’. This involves holding your baby, firmly but gently, while they are inside their incubator or cot. Place one hand over your baby’s head and the other round your baby’s bottom or feet. This gives him/her a feeling of comfort, being contained within your loving hands. Ask the nurses or doctors what you can do to comfort your baby. It can be helpful to know when your baby may be ready for your touch as they develop and become more stable.
…your loving touch
10
'He would have been about 5 or 6 days old. One of the nurses just said....
"...Would you like to have him out for a cuddle?"
...I thought at that stage they just wouldn’t do that. She said that it was fine. She took him out, with all the wires and cables and everything, got him into a comfortable position and we were able to just sit.
That was a positive experience.’ 'The nurses weren’t wanting me to take him out and I thought...
"...I want to take him out and hold him. That’s what he needs. He’s just lying there and I want to hold him." '
11
Coming & going Partners have a lot to deal with… As a partner you may feel overwhelmed. In addition to having concerns about your baby, you may be worried about your partner’s health and how best to support her. You may also have other children to care for who need you too. Knowing what is happening If you need to know more about your baby’s progress, ask your neonatal nurse or ask for a time to meet and talk to the neonatologist (baby doctor). You might want to write a few things down, or ask them to be written down, because it can be hard to remember information when you are worried and there is a lot going on. Getting some help You may receive lots of telephone calls and emails from concerned family and friends. Try sending one message to everyone with the latest news, or ask a friend to send messages for you. Supporting your partner, caring for your baby and perhaps other children, juggling work and getting time off, is a huge undertaking. Try to accept help when it is offered and think of simple tasks someone could do for you, like asking a neighbour to pick up some bread and milk.
…with demands inside and outside the neonatal unit
12
'As a dad, you feel somewhat superfluous… I just felt that wasn’t going to happen to me. So I was going to ask questions and get myself into it.'
D 'I just looked at what was happening, I looked at my wife… Probably the way I dealt with it was a bit selfish, but I didn’t care about the baby, I just wanted her to be OK.'
'The doctor wasn’t sugar coating anything at all… It certainly helped me to know that we were going to get very frank information'
'What they told Claire during the day, they would tell me at night when I went in. It was clear and understandable, and they were brilliant.' 13
Being fully involved Feeling you are at the centre of care… While your baby is on the neonatal unit you will be shown how to be involved in his/her care. This may mean changing nappies, feeding your baby, or washing him/ her in the incubator. Try to be clear about when you will be in the unit and for how long; stay in touch if your plans change. This can be especially important if you are breastfeeding, involved in feeding your baby, or if you are planning to bring older brothers and sisters in to visit. Hopefully you will be able to establish some kind of routine which allows you to take part in the care, and to have skin-to-skin time with your baby. Always on the go Travelling to and from hospital can be a challenge, involving a lot of time and additional expense. It can be tiring to drive if the traffic is heavy or you have to come by public transport. Ask what the policy is on parking fees for families with a baby on the neonatal ward. Doctors' rounds The policy on parents being involved in doctors’ rounds varies between units. This is a complex and difficult issue. You may want to find out what the policy is, so you know what to expect. In any event, you will be kept informed and should be involved in key decisions about your baby’s medical care. You may want to keep a diary of key information and feelings. This can be of practical help when trying to recall details, and can help you to revisit and process your experiences in the future.
…makes a difference for you and your family 14
P
'They let me get involved quite a lot – they let me dress him,
I was there...
...for when he was having medicine and that sort of thing. I was called from the ward, and they let me feed him, so I was quite involved in that respect.'
'Gerry got quite involved. They arranged top and tailing times when he was there, and the time to put medicines through his tubes...
...They would wait for your partner to come so they could get involved.
Otherwise they were missing out on valuable bonding time.'
'Ian found it really hard to come all the way to the neonatal unit. He only came through once a week because he wasn’t working and we didn’t have the money. I got help from the Social Fund, but he didn’t get any financial support so he hardly got to see me or Abby.'
15
Communication & support Encouragement is key… Interviews with parents revealed that it made a big difference to them if they could build up a rapport with the nurses who were caring for their baby. Neonatal nurses Nurses were mostly easy to talk to, thoughtful and kind. Many of the parents felt this was one of the really positive aspects of the care they received. The POPPY Project highlighted that involving and supporting parents produces better health and well-being for the baby and family as a whole. Ward rounds and medical updates The POPPY survey of neonatal units in the UK, carried out in 2008, found that in about one in six units, parents were excluded from ward rounds completely. In the other units, parents were either present for the whole of the round or invited in when their baby was discussed. In two thirds of units, staff discussed their baby’s care and management with parents after a ward round, including all of those units where parents were excluded from the round. In one research study, parents liked being given a recording of the discussion when they met with medical staff to talk about their baby. Our survey showed that no units in the UK were offering this service in 2007-8, and few gave parents written summaries about their baby’s current condition and care. However, units in Edinburgh and Liverpool provide personal updates online via BabyLink. In interviews parents said that they felt it was important to understand care routines, feel able to ask questions, and have a clear idea about what to expect for their baby’s development.
…to building parents’ confidence 16
'It was quite technical how she explained it and I thought: "If all he’s got is jaundice, is that why he’s under the lights?" But you’re kind of frightened to ask that question because you think...
...Does it sound stupid?' 'The nurses were helping me to breastfeed, change him and wash him… Every 20 minutes there was a knock on the door. "Do you want a cup of tea? Do you want a chat? Are you worried about anything?" It was just fantastic.'
D 'They were really good. If I wanted to know something, they’d tell me, and they’d come and speak to me if I wanted to speak to people. I used to ask the same questions over and over, but they’d still be patient with me because they know what you’re going through.'
'Everybody was consistent with the information they were giving, and the way it was delivered from each member of staff was good as well.' 17
Getting to know other parents Sharing experiences with other parents… In the POPPY study, parents said it made a big difference if they were able to get to know other parents in the neonatal unit. Other parents can help you understand how the unit works, and about what to expect as your baby grows. It can lighten the atmosphere to be able to share your experiences, and even a laugh or two. Many, but not all, units have kitchens, where you can make a hot drink and have a chat. Or you could pop to the hospital café for a while. You could:
• • • •
have your meals with other parents exchange mobile phone numbers or email addresses see if the unit has a parents’ support group speak to parents who are new to the unit.
Talking to a professional Some units have a psychologist or counsellor to provide extra professional support to parents. Some parents find talking to a counsellor helps to keep them going, or say that this enabled them to talk about things that they hadn’t discussed with their partner.
…can be invaluable
18
P
'There was a lovely lady, a counsellor. When I’d sort of gone into shock she came to see me and spent a fair amount of time with me. If I was walking down the corridor to visit Josie she’d come and say "hello" so I knew she was there, and that was really comforting.'
'Everyone is feeling the same emotions, and it’s nice to give reassurance to someone and they do the same to you.'
'A lot of the stuff we got from talking to other parents... ...especially things like certain ways babies behave with them being premature. I remember one time saying: "The baby keeps crossing his eyes over" to other mums and dads and they’d say, “Oh yeah, he does that, I’ve been told such and such”. And that puts your mind at rest.' 'We were all quite similar – you start a conversation and it grows. I found that invaluable, just being able to laugh about things, to complain about things…'
‘One of the mums sent me a message saying: "If it wasn’t for you, it would have been a hell of a place. You helped make it easier." '
19
Moving units, moving on Coping with change… If your baby is born at a hospital without intensive care facilities or there is no cot available, s/he may need to be transferred straight away. If your baby is in intensive care or high dependency, you will move to a new level of care as your baby grows. For some, this will involve moving hospitals to a more local special care baby unit. Some hospitals also have a transitional care unit, in which parents prepare to take their baby home. Transferring between levels of care Many parents in the POPPY study said they felt uncertain about their baby being transferred from one level of care to another (i.e. intensive care to special care; special care to transitional care; hospital to going home). If your baby is transferred to a new hospital s/he will travel in an ambulance. You might want to find out in advance whether you can travel with your baby. Policy may vary. If you are not allowed to go in the ambulance, it can help to know who will travel with your baby; it may well be a nurse from the unit. Also, having a look at the travel incubator can help. Adapting to new circumstances It can be hard for mums and dads to adapt to new circumstances, especially if the expectations and routines of the staff are different. This can be scary at first. Take your time to get used to things, and trust your instincts. Ask for help if you feel unsure. You should be introduced to staff who should explain, for example, where to store expressed milk, what you will be expected to do as part of your baby’s care , doctor’s rounds, policy on skin-to-skin care, and so on. It might help to write things down. If you are unsure about any aspect of your baby’s care, just ask.
…for you and your baby 20
'In NICU, the nurses were there all the time, but in special care they left you to deal with it a bit more which was scary to begin with.
But as time went on...
...I could see what was happening and what I had to do for him.' 'When they said: “We’re
going to put you in
transitional care," I burst out crying...
"He’s not ready to come home, is he?
Why are you putting him in transitional care?"
...It was like nobody prepared me at all. And all I had in my head was I felt so bad because I should have been jumping up and down with joy, but it was sheer panic.'
'I just felt a bit thrown in at the deep end at each stage, and it took a wee while to acclimatise.'
'It would help the first time you go into the ward to have someone sit with you for 10 minutes and just go through what happens, what they do and where things are kept.'
21
Going home Discharge is a huge milestone… Taking your baby home is always a big deal for mums and dads, and the longer your baby is in a neonatal unit, the bigger the milestone it feels. You’ve been waiting for this moment for so long, yet it can seem really daunting. From being in a controlled environment with professional care 24/7, you are now in charge. Your health visitor and GP should have been informed that your baby is to be discharged. It can be very helpful to speak to your health visitor before you come home and to arrange for them to visit you at home early on. Being clear about what you and your baby need It may sometimes be hard for others to understand what your baby has been through and what their needs are now, even though they are home. People will want to spend time with you and the baby, but finding time to rest is important, so try and have some boundaries. Be clear with your family and friends about short visits, hygiene and how they can help. In the early days you may feel the best thing people can do is something practical such as putting a wash in, or preparing a meal. Take your time about going out and try not to put yourself under any pressure. Try something simple to start with, like a short walk. It might help to get your nappy bag ready beforehand, so that you are not hunting for things at the last minute. Finding places to go Many areas now have a children’s centre with drop-in sessions for new parents. It can be helpful to have a place to go where people know you and what you’ve been through. Your health visitor, Bliss or your local NCT branch might be able to help you contact other parents who have had a premature baby. You may find that people ask well intentioned questions about your baby, which make you feel uncomfortable. Have a standard answer, such as, 'She had a difficult start, but is doing fine now.' Remember, you don’t have to explain yourself to everyone!
….and it can take a while to settle down 22
'A neonatal nurse from the unit phoned me the following week to check on everybody, how we were all getting on and stuff…
That was very reassuring.'
'You do have questions by the time you get home. You think what about this and that... It’s obviously totally different from having a baby who goes full term.'
'When we were in transitional care the nurse explained to me: "Once you get home, you’ll hear noises that you’ve never heard her make." '
'A lot of people just don’t seem to understand.
There are still lots of things going on with him, but you still feel isolated.'
23
At home Be kind to yourself… POPPY parents said support from the neonatal unit after going home was important. Health visitors with specialist knowledge of prematurity, when available, were also highly valued. Neonatal units usually encourage parents to call if they have any questions once the baby goes home. Remember if you are not happy with your health visitor or GP, you can ask to have someone else. The support of friends and family, and other parents with shared experiences, is also very important. Some people find it difficult to relate to parents of full-term babies. Coping with difficult feelings Anxiety, isolation and depression are emotions many new parents, and especially mums, feel. Those who have had a premature baby are particularly vulnerable. Worry and tiredness can also put a strain on your relationship with your partner. Both parents may be struggling to cope with too much at once – delivering on work and domestic jobs, perhaps caring for older siblings and providing emotional support to each other. You may find friends and family think that ‘everything is alright’ now that your baby is home. This can be unhelpful if you are beginning to think about what you have been through for the first time. You may need practical and emotional support for some time. Your experiences may well have been traumatic at times, and it will take a while to come to terms with what has happened. Recognising the strain you are under is important. Asking for help If you are finding things difficult, arrange an appointment to talk to your health visitor or GP. It’s not a sign of weakness to say you’re finding things difficult. Your local children’s centre, if you have one, may also provide useful services, such as help from a family support worker.
…as things settle down you will be able to enjoy your baby 24
'I think there needed to be some information about depression – it does happen, you’re going to get some kind of ‘feeling down’ after all the
D
highs and lows, and all the trauma.'
'We know about three or four mums who were there at the same time, we’ve been to visit… One of the mums had a slight dip, but we’ve all been through the same thing. You also find out that other babies are doing the same things, and you find out your baby is normal.'
'It’s just where friendship comes from, I suppose...
...Just sit down, have a cup of coffee.
I know other parents have been visiting and helping each other.' 25
Support for mums & dads About NCT You can contact the NCT helplines with any questions or concerns you have about becoming a parent. Our helplines are staffed by experienced NCT professionals who are mostly parents themselves, and who understand the pressures that new parents face. You will find details of NCT helplines on the back page. The NCT supports mums and dads to be the parents they want to be. We have a network of branches operating in England, Scotland, Wales and Northern Ireland where local courses, groups and events are held for mums and dads. NCT breastfeeding counsellors can help you to establish breastfeeding. We also operate a Special Experiences Register which puts parents in contact with others who have been through the same or similar experiences. About Bliss Bliss is dedicated to ensuring that babies born sick or premature survive and go on to have the best possible quality of life. We provide practical and emotional support to families during an extremely difficult time, so they can give the best care to their babies. Our specialist study days and training supports doctors and nurses to develop their skills and we fund research to improve the care of all sick and premature babies. We raise awareness of the issues affecting special care babies and fight for essential change within government and the NHS. Children’s centres You can find out more about your local children’s centre from your local library or online.
26
Feedback
If you feel aspects of the care you received on the neonatal unit and after you were discharged were especially good or did not meet your needs, let the neonatal unit manager know. Your comments may help another family in the future. What I liked about my care
What I didn’t like or would like to see changed
How my baby/babies are now
Cut out this page and send it to your local neonatal unit. If you want, you can add your name, address and telephone number. Name Address
Phone number 27
The Poppy Project The POPPY Project involved research on three aspects of neonatal care and services for the parents of premature babies. These were: • • •
parents’ experiences of having a pre-term baby and their views on the support and information they were offered, services and facilities currently provided for parents by neonatal units in the United Kingdom (UK), interventions for improving communication, support and information.
Babies being cared for in neonatal units in the UK usually receive outstanding clinical care. Less consistent attention has been paid to the non-clinical issues, and how these affect a family’s journey through neonatal care and their experience of the transfer from hospital to home. The POPPY Project recommends that all neonatal units provide family-centred care. Family-centred care in a neonatal unit involves doctors and nurses being aware of how it feels for parents to have a premature or sick baby, and working to improve the family’s experience. This means they should be willing to ‘stand in the shoes of parents’. It involves introducing practices and providing facilities that encourage and support parents and families. It is vital that mothers and fathers are at the centre of the care process, as well as their baby or babies.
To find out more about the POPPY Project visit: www.poppy-project.org.uk 28
29
Helplines
NCT Pregnancy & Birth Line: 0300 330 0772 Covers feelings in pregnancy, planning for birth, making choices, coping with pain in labour, place of birth and life with a new baby. NCT Breastfeeding Line: 0300 330 0771 Provides support with feeding, making choices, positioning, resolving difficulties, increasing your milk supply and going back to work. NCT Enquiry Line: 0300 330 0770 Can put you in touch with local services in your area. www.nct.org.uk www.nctshop.co.uk Bliss - for babies born too soon, too small, too sick Bliss, the special care baby charity, provides vital support and care to premature and sick babies across the UK. Founded 30 years ago, they offer guidance and information at a critical time in families' lives. They also fund ground-breaking research and campaign for babies to receive the best possible level of care regardless of when and where they are born. Bliss, the special care baby charity, can give you information through their website at www.bliss.org.uk or contact them on their Freephone Helpline at: 0500 618 140