Support for you and your baby

When you have a baby your life changes immediately. When you have a premature or sick baby you are thrown into a world that you probably didn’t know existed. Entering the Neonatal Unit for the first time can be frightening but you will soon get used to all of the machines, wires and beeps and become an expert when it comes to caring for your baby.

Hey Its Ok…….. (hear from our parents)

‘Family integrated care is a model that supports and educates parents and carers to become integral participants in their baby’s care from the time of admission to the NNU in partnership with the neonatal team’

Family Integrated Care (FICare) is a model of neonatal care which promotes a culture of partnership between families and staff; enabling and empowering parents to become confident, knowledgeable, and independent primary caregivers. Neonatal units with a strong FICare philosophy nurture families into this role by listening to them, building on their strengths, and encouraging their participation in experiences and decision-making to enhance control and independence. The FICare model ensures that they can be a family as soon as possible; creating space for necessary medical care whilst facilitating the nurturing bond and love that only they can provide for their baby (BAPM 2021). Evidence shows that babies looked after this way have fewer infections, are more likely to breastfeed, gain weight more quickly, have fewer complications and go home sooner.

While your baby is receiving care on a Neonatal Unit you will be able to do many of the day to day cares your baby needs. To ensure your baby’s comfort and safety you will be taught all the skills you need to give all the non-medical care to your baby. It may seem frightening and overwhelming at first but with the right support and guidance your confidence will soon grow.

Your baby will receive a baby passport that will make sure that both you and the Neonatal Unit staff know what you are able to do for your baby. This will be particularly helpful if your baby is transferred to another hospital. Please ensure the passport is kept with your baby during their Neonatal Stay

The Northwest Neonatal ODN invests and recognises the importance of parents being the primary care giver to their baby. We support Neonatal units to deliver consistent high-quality standards through Family Integrated Care with an accreditation process. The 22 Neonatal units across the Northwest are committed to implementing and embedding FiCare. All the units are all working towards stage one accreditation. You will find the accreditation status of each the units within the unit specific information. Every Neonatal Unit is measured in line with the 4 pillars of FiCare –

  • Staff Education & support Providing education and tools for staff to enable them to educate, mentor and support parents in caring for their infant in the NICU. Allowing staff to feel comfortable with the model of care and embrace their role as key facilitators of FICare. Leads to consistency in parent teaching sessions.
  • Parent educationProviding parents with the knowledge, skills, and confidence required to care for their infants in the NICU setting.  Enabling parents to be part of the health care team by offering small group education and the opportunity to participate in medical rounds, while being supported by individual bedside learning.
  • NICU environment – Ensuring that unit policies and procedures are supportive of the model. Creating a physical and social environment that is conducive to the implementation of FiCare
  • Psychosocial SupportProviding adequate psychosocial support for families to enable their participation in FiCare. Creating and supporting opportunities for peer-to-peer support

The process of accreditation includes a review team made up of Parents, Medical staff, Nurses and Care Coordinators.

Parent’s presence in Neonatal Care cannot be underestimated, parents are partners in care. Staff on the unit are there to support and guide you, please do not hesitate to discuss Family Integrated Care and how you can be fully involved in your baby’s care.

Feeding Your Baby

The NWNODN is committed to supporting the Baby Friendly Initiative ensuring all units across the North West support all mothers with feeding and to help parents to build a close and loving relationship with their baby. For more information about the accreditation process or and the standards required please ask a member of staff or visit Accreditation – Baby Friendly Initiative (unicef.org.uk)

“One of the best things you (and only you) can do for your baby while in the neonatal unit is to provide breastmilk”

Breast milk is the best milk you can give to your baby and even if you don’t intend to breastfeed, expressing your milk is the best way you can really help your baby in the early days. Your breastmilk will not only provide the nutrition to help your baby grow, but it will also provide antibodies to protect them from infection while they are in hospital and for years to come. This protection is especially important for premature babies, your breastmilk is unique for your baby. The earlier you start to express, and the more often you express, the more milk you will produce for your baby’s growing needs. You will be given lots of information available to assist you to express your milk and each Neonatal Unit supports and encourages mums to express either at the baby’s cot side or in a dedicated expressing room.  There are fridges and freezers onsite to store your milk and you will have breast pumps available to use on the unit and for you to loan free of charge whilst your baby is in hospital.

Whatever decision you make, you will be supported by staff on the unit and there are specialist feeding teams to support you and your baby’s feeding journey.

Donor Milk

If your baby is premature or sick and ready to start feeding you may be advised that donor milk would be best for your baby until your own breast milk is available.  “Donor human milk has been cited as reducing necrotising enterocolotis and other morbidities such as bronchopulmonary dysplasia, late-onset sepsis and retinopathy of prematurity in small, sick and/or preterm infants, especially the very low-birth-weight and extremely low birth weight infants.” Protecting, promoting and supporting breastfeeding: the baby-friendly hospital initiative for small, sick and preterm newborns (World Health Organisation & UNICEF) August 2020

The nurse looking after your baby will discuss this with you and provide a leaflet answering questions you may have. For information on donor expressed breast milk, please visit the Cheshire and North Wales Human Milk Bank website by clicking here https://www.milkbankatchester.org.uk/

Information and support

We recognise a diagnosis of HIE can be devastating and a very confusing time for families. In addition to the information provided by the hospital, the following resources have been put together to help sign post people to where additional information and support can be found.

Information leaflets available for families:

Organisations offering support for families affected by HIE:

Information/ resources for families affected by HIE

BeBop  (Baby Brain Protection) website provides information and support for families and healthcare professionals on a broad range of conditions affecting the brain of premature and term newborn infants including HIE. the families page of the Bebop website provides information, support and stories for those affected by HIE.

We recognise a diagnosis of HIE can be devastating and a very confusing time for families. In addition to the information provided by the hospital, the following resources have been put together to help sign post people to where additional information and support can be found.

Cooling in Neonatal Transport

Connect North West is the neonatal transport service for the NWNODN and one of the first neonatal transport teams in the UK to undertake active Cooling in transport

Babies who require Cooling treatment for HIE will need to be cared for in one of the seven Neonatal Intensive Care Units (NICUs) across the network. Babies who require cooling but are born in a local neonatal unit (LNU), where long term cooling treatment isn’t available, will need to be transferred to a NICU by the specialist neonatal transport team, Connect North West.

If your baby needs to be transferred this will not usually mean a delay to starting treatment. Some LNUs have equipment  to initiate active Cooling whilst others will start passive cooling. Connect North West have a specialist transport incubator with all the equipment needed to start active cooling treatment. Occasionally where your baby may require additional specialist treatment for transfer, for example a different type of ventilation, cooling treatment may have to be commenced on arrival at the neonatal intensive care unit. The team will explain to you the process of starting the cooling treatment and your baby’s transfer.

The transport team will ensure your baby receives the best possible care during the transfer.  After completion of the cooling treatment at the NICU your baby may be transferred back to your local neonatal unit before discharge home but your baby’s nurse and consultant will discuss this with you.

Picture of the Cooling transport Incubator used by the neonatal transport team Connect North West:

Commonly used terms

Cooling/ Therapeutic Hypothermia: deliberate reduction an infant’s body temperature to around 33C for 72 hours.

Hypoxic-ischaemic encephalopathy (HIE)

Birth Asphyxia/ Asphyxia (as-FIX-ee-uh) means lack of oxygen and blood flow to the brain. Birth asphyxia happens when a baby’s brain and other organs do not get enough oxygen and nutrients before, during or right after birth. This can happen without anyone knowing. Without oxygen and nutrients, cells cannot work properly. Waste products (acids) build up in the cells and cause damage.

When your baby is on a neonatal unit it can be both physically and emotionally demanding and you might find that this experience had an impact on your emotional well-being. We know that having a baby on the Neonatal unit can impact any parent – no matter whether your baby was born at term or prematurely, and no matter how long your journey has been through the Neonatal unit. Whatever you’re experiencing, you’re not alone and support is available.

Staff are here to support you and some units have counsellors, Clinical Psychologists, Wellbeing Practitioners who are part of the Neonatal team. They are available to talk to while on the unit and in some cases post discharge. Information on supporting wellbeing and mental health can be found on information boards on the units or please ask a member of the team. Further information on mental health and wellbeing can be found at Information about parents’ mental health | Bliss

In some units you will have the opportunity to meet peer supporters who attend the unit during the week, they have lived experiences within neonatal care and can offer invaluable support.  There are parent support groups in the form of closed facebook groups/twitter/instagram pages which can offer support and advice.

Please ask a member of the team for more information and follow the links below.

Introducing the Neonatal Families & Staff Together Project (NFaST)

The NWNODN and Spoons Charity have partnered an exciting project to create emotionally healthy neonatal units.  The Neonatal Families and Staff Together (NFaST) project trialled interventions designed to enable neonatal units to become more psychologically responsive and emotionally supportive environments.  Through a mixture of psychological input and peer support the project explored what really works for families and staff, as well as identifying and capturing existing examples of best practice and making recommendations for future service design.   Their evaluation report can be found here

As a result of the progress made through this project, further work has been commissioned.  This second stage, delivered by Spoons Charity, will continue the provision of peer support with the objective of embedding neonatal peer support via lived experience into units within the North West where there are currently gaps.   Peer support will be delivered by volunteers who have experienced neonatal care in the locality and will take the approach of:

  • Developing relationships with hospitals, NHS and voluntary sector partners
  • Recruiting and training volunteer peer supporters; and
  • Establishing a common delivery framework for parent support in the neonatal context

Links

Charities

Useful Apps

Leanne & Dave’s Story
(Evie & Noah’s mum & dad)

Sarah & Steve’s Story
(Heidi’s mum & dad)

Katie & Simon’s Story
(Flo’s mum & dad)

Kirsten & Gareth’s Story
(Tom’s mum & dad)

Kerri & Lee’s Story
(Hollies mum & dad)

Hayley & David’s Story
(Harrison’s mum & dad)

Sarah & Colin’s Story
(Isabella’s mum & dad)

Jen & Stuarts story
(Robbie’s mum& dad)

Vic & Tom’s story
(Tommy’s Mummy & Daddy)

Having a baby on a neonatal unit can be a very difficult and worrying time for families and we recognise that you will need supporting through this experience.

Neonatal Staff are there to support you with taking care of your baby’s day to day needs, they will also explain any medical needs your baby may have. When decisions need to be made about your baby, staff are there to provide information to assist you in making your choice.

Please do not hesitate to ask any questions you may have on the unit where your baby is being cared for. In addition to support from the neonatal unit please find below links to further information around neonatal care.

General Support & Advice:

UNICEF Leaflet for parents:

Lullaby Trust The Lullaby Trust (@LullabyTrust) Baby Check:
Unsure if your baby is very unwell? Not sure whether to take your little one to see a Doctor? The  #BabyCheck App will help you decide. Available to download free from the App Store and Google Play.

BLISS is the leading UK charity for babies born premature or sick. It supports families with a baby in neonatal care, works with health professionals to provide training and improve care for babies.

Best Beginnings Baby buddy app:  is your personal baby expert who will guide you through your pregnancy and the first six months of your baby’slife. The app has been designed with parents and professionals to help you give your baby the best start in life and support your health and well being.

Spoons: peer support for families

Neonatal Natter: peer support for families

Neomates: peer support for families

The Smallest Things Charity: life-after-nicu-report-2017compelling and insightful report for both health care professionals and parents about life following neonatal care, based on information from over 1,600 mothers.

1 in 10: a community focused on bringing parents of premature babies together to share their experinces, knowledge and offer comfort where possible.

Leo’s Neonatal – Leo’s is a parent-led charity set up to support families in neonatal care in the North East of England. Their booklet provides general information and advice for parents (however it should be noted that referrals are only for parents in the North East).

Ei SMART – Ei Smart is a voluntary group of passionate clinicians, academics and parent working together to offer support for infants with developmental challenges from birth onwards.

Bereavement/Palliative Care Information & Support:

Still birth and Neonatal Death Charityhttps://www.sands.org.uk/

Together for Short Lives Charity: http://www.togetherforshortlives.org.uk/

Memory Milk Donations After Losshttps://www.milkbankatchester.org.uk/donationafterloss

4Louis: https://4louis.co.uk

NW Hospices:

Claire House

Hope Hospice

Brian House

Derian House

Cardiac Conditions Information & Support:

Tiny Tickers: is a small national charity that works to improve the chances of babies born with a serious heart condition

ROP Information & Support:

Parent information on treatment of ROP:
http://www.rcpch.ac.uk/system/files/protected/page/Treatment%20Leaflet%2021-04-08.pdf
Parent information on screening for ROP:
http://www.rcpch.ac.uk/system/files/protected/page/Screening%20Leaflet.pdf

Information on Downs Syndrome:

Downs Syndrome Association 

Information on Hydrocephalus:

Shine (shinecharity.org.uk)

Info coming soon – meanwhile you can find out more about Lancashire Women at https://lancashirewomen.org/

Peeps supports anyone touched by HIE. We offer emotional, practical and financial support across the UK. Some examples of the support available include free parent packs (for those at the start of their HIE journey), peer support, counselling / trauma therapy, equipment fund up to £500, and much more.

Please don’t hesitate to get in touch with any questions or if you would like our information in an alternative language or format.

Peeps latest leaflet can be found here

You can also download the Peeps-HIE app, free on AppStore or Google Play, which has lots of information and advice.

Spoons is a charity that supports families through their neonatal journey.

Their aim is to help parents and the wider family navigate life neonatal care, transition from hospital to home and life beyond the neonatal unit.

Spoons provide the following services for families in the Greater Manchester area:

  • Peer to peer support service at the cotside, which is delivered by parents who have lived experience of neonatal care
  • Closed Facebook Group exclusively for neonatal parents – Spoons Neonatal Family Support
  • Telephone/ or text support
  • Baby massage
  • Sensory play sessions for babies, their parents and siblings
  • Coffee morning and community groups
  • Family Support Service – help with accessing other services, financial support, support at home
  • Funded sessions of counselling and trauma therapy

Parents can self refer for any of the above services by completing the Self Referral Form 

Health Professionals can refer parents to our services by completing the form here

https://spoons.org.uk/