Explore the provision of neonatal care in the hospitals affiliated with your university by using the ‘Network Information’ on the BAPM website (www.bapm.org/networks_info/).

• What levels of care are available in your local network?
• How far would parents have to travel from an SCU or LNU to receive neonatal intensive care?
• What might be the emotional, social and financial impact on the family involved in a transfer for a higher level of care?

Your answers to the first two questions will vary enormously, depending on your location. Compare your answer to the last question with some of the potential responses given at https://study.sagepub.com/essentialchildnursing

Answer:

1. Emotional impact: Parents will experience a range of feelings from sadness, anxiety, helplessness, depression, grief at the loss of not having the ‘expected pregnancy’ and ‘expected child’. Uncertainty, joy and elation are also felt but tempered by the unknown.  All parents who have a baby admitted to the neonatal unit experience some degree of bereavement.
2. Social impact: Mother–baby separation (maternity unit – neonatal unit), the incubator itself creates a barrier and can limit parental access to their baby.
3. Financial impact: Cost of travel, parking, child care, admission/illness (length and severity) could affect employment and earningsc

A neonatal nurse has assumed the voice of a pre-term baby in order to help parents understand the different needs of their pre-term infant. The advice offered is not only relevant to parents but will provide you with insight into the pre-term infant’s developmental needs in light of the environmental stressors just discussed. ‘Confessions of a preemie’ can be found at:

www.peekabooicu.net/2013/07/confessions-of-a-preemie-why-i-am-different-than-a-full-term-baby/

Once read, formulate a framework of care to meet the developmental needs of the pre-term

infant.

Answer:

Developmental care strategy

Goal of care:

 To support infant’s efforts to become behaviourally organised and physiologically stable as s/he grows and matures.

Aim of care:

Modify the delivery of care and neonatal environment using developmentally supportive strategies in order to:

• Prevent/reduce stress and agitation
• Preserve the infant’s energy to promote recovery, growth and development
• To facilitate the infant to develop self-regulation and central nervous system organisation

Strategies:

Recognise physiological stressors/stimuli such as handling, painful procedures, loud and/or sudden noise and prevent/minimise. These can lead to tachycardia, bradycardia, de-saturations and/or apnoea. Employ strategies like kangaroo care, breast feeding, non-nutritive sucking and sucrose during painful procedures.

Modulate the neonatal environment by protecting the baby from excessive/inappropriate light and noise. Decrease light and noise levels to reduce sensory overload (e.g. agitation, irritability and crying) and facilitate rest/sleep. Strategies to reduce light include incubator covers or hoods, more natural nursery light and dim lighting at nights to help infant achieve a day/night pattern. Strategies to reduce noise could include a ‘no radio in the nursery’ policy, quiet time, soft closing portholes, bins and doors, removing bubbling water from respiratory tubing, giving handover away from the bedside, avoid talking loudly, especially across open cots.

Protect the infant from over and/or inappropriate stimulation. Facilitate appropriate stimulation. Recognise and teach parents to recognise behavioural cues or the infant’s body language which indicates avoidance or ‘stress’ behaviour. Behavioural dis-organisation could include changes in colour (mottled, dusky, cyanosed), apnoea, bradycardia, desaturation, hiccoughing, sneezing, yawning, gagging, vomiting, tremors, arching, splaying of limbs/fingers, frowning (pursing of lips, furrowing of brows), gaze aversion and loss of tone.

Negotiate with parents a pattern of care to allow maximum time for sleep and growth. This could include clustering care/minimal handling. Positioning is an important strategy to promote behavioural organisation, sleep and help maintain the infant’s temperature. A settled infant has reduced energy expenditure; the valuable calories can be used for growing. Positioning, whether prone, supine or side-lying, requires the infant to be placed with hands midline and extremities flexed. Provide boundaries using rolls/nests to maintain the desired posture. Reduce agitation and therefore conserve energy and create the feeling of security for the infant. Avoid moving the infant who has found its own boundaries.

Normalise parental expectations by promoting parental understanding of their infant’s behaviour to include signs/presentation of ‘stress’ or behavioural disorganisation. Facilitate opportunities for parents to provide ‘all cares’, appropriate sensory stimuli as the infant develops, kangaroo care, and non-nutritive sucking. Facilitate family-centred care. Document education given and parent–infant interactions.

Note that a change in tolerance to handling and stimulation that had been previously tolerated, could be an indication of deterioration in the infant’s condition. For example, this change could be an early indication of infection.

Louise, Ian and Ted (aged 18 months) were on holiday in Lanzarote. On their last day there, Louise, 24⁺⁵ weeks pregnant, went into premature labour. The family were transferred to Las Palmas, where Louise delivered Hugh. He weighed 660 grams, required ventilation, suffered an intraventricular haemorrhage and at four weeks required ligation of his patent ductus arteriosus. Hugh then developed necrotising enterocolitis (NEC), which was medically managed. His condition deteriorated and Hugh was baptised.

Hugh, 8 weeks old, was transferred to the UK for ongoing intensive care. Unfortunately, his local network NICU was closed to admissions, so Hugh transferred to a NICU outside the network for a few days, where Louise had her first cuddle with him.

Hugh’s progress was slow. He made small steps forward and many large strides back. On arrival to his local NICU, complications from his original episode of NEC resulted in further bowel surgery. After three months Hugh was transferred to special care and appeared to be on the road to home. Due to further bowel complications and sepsis, Hugh moved back and forth between IC/HD and SC. On his third attempt he managed to stay in special care and make the required progress in feeding and growing to be considered for discharged. On day 246 Hugh was discharged home.

To celebrate Hugh’s first birthday and as thank you, Ian posted a video, which captures Hugh’s and his family’s journey. This can be seen at:

www.youtube.com/watch?v=CuBzyP0xwJQ

Explore the feelings and needs of Louise, Ian and Ted on Hugh’s various admissions and transfers to receive the appropriate level of care, by answering the following questions:

• What feelings might Louise and Ian be experiencing as a result of Hugh’s unexpected arrival and subsequent admission to the neonatal unit in Las Palmas?

Answer: Feelings could include shock, guilt, anger, disbelief, anxiety, fear, loss.  All parents whose baby is admitted to a neonatal unit experience some feelings of loss (for the ideal baby, for what should have happened).  Communication is often an issue as the problems experienced by the baby and equipment involved may be difficult to comprehend or not easily expressed in a language the parents understand.  Although Louise and Ian would have each other, they would be physically distant from their extended family and would only have themselves to take care of Ted.  Dad could feel torn as he would want to be with Louise, Ted and of course Hugh.  Issues related then to extending the ‘holiday’ would relate to work back in the UK, finances and accommodation.

• What feelings and issues may arise for Louise and Ian when Hugh is re-patriated to the UK, and then as he moves between nurseries as his condition improves and deteriorates?

Answer: Hugh will need a passport.  Relief at returning to the UK to family and friends.  Anxiety that Hugh may not be well enough to make the journey, cost of journey, separation as Ian and Ted cannot travel with Louise and Hugh.  Stress and anxiety at leaving what has become a familiar environment and doctors and nurses that are trusted to deliver Hugh’s care. Neonatal care in the UK is unknown, starting new relationships with Hugh’s caregivers, new hospital rules and routines.  When moving to a lower level of care – excitement as an indication Hugh is making progress and getting better.  With each move the parents are required to meet and form relationships with new staff and experience different ways of doing things.  When moving back for a higher level of care –can precipitate all the anxieties experienced when Hugh was first admitted.  Fear that maybe this time Hugh will not make it.

• Considering the case study of the Hunter family, what strategies can you employ to help the parent deal with their feelings?
• When and how would you promote parent–infant attachment?

Answer: Good communication in a language and at a level understood by parents.  Listening.  Continuity in care, providing positive bonding experience, involving parents in as much or as little care as they want.  Involving parents in care decisions.  Encourage visiting from family and friends to provide support.  Encourage the mother to express breast milk for her baby

• What might be the impact of the neonatal environment on family-centred care?

Answer: Units can be hot and noisy making it difficult to spend time on the unit.  Staff may be busy with other babies and not free to attend when needed.  Lack of privacy to enjoy, care and feed their baby.

• What strategies you would employ to involve the whole family in the care of their baby?

Answer: Ideally open visiting for family, siblings and nominated family/friends.  Regular meetings are held to encourage parents to talk about the experience of having their baby on the unit.  Parents should be encouraged to ask questions and raise concerns.  Encourage positive experiences with baby and handling appropriate to the baby’s wellbeing, e.g. from containment holding to skin to skin.  Siblings should be encouraged to participate in care as age appropriate; younger siblings can colour and make pictures, provide small presents like stuffed toys for their siblings.

• How can you support Louise to initiate and maintain her lactation? You might find it helpful to watch the video From Bump to Breastfeeding at www.bestbeginnings.org.uk/fbtb.
• What routine newborn screening takes place in the UK?

Answer: Provide a simple explanation of relevant breast anatomy and physiology of lactation.  Explain importance of baby to establishment of ‘let-down’ or prolactin-reflex and strategies that can be used to stimulate each.  For example, to stimulate the ‘let-down’ reflex strategies could include: pumping (single, switch side to side, double), hand expression, frequency of expression (8– 10 times per day), express at night when prolactin levels are highest, Kangaroo care/baby to breast for a ‘lick ‘n promise’.  To simulate the prolactin-reflex strategies could include: establish conditioning reflex by expressing next to baby or with a photo/video of baby, kangaroo care, stimulation to include massage, stroking, shaking, nipple stimulation and baby to breast for a ‘lick ‘n promise’.

Teach mother to hand-express, pump-express, care of pumps, storage and labelling of milk.

All babies in England are offered screening for:

• sickle cell disease (SCD)
• cystic fibrosis (CF)
• congenital hypothyroidism (CHT)
• six inherited metabolic diseases (IMDs) are also screened for.  They include: phenylketonuria (PKU), medium-chain acyl-CoA dehydrogenase deficiency (MCADD), maple syrup urine disease (MSUD), isovaleric acidaemia (IVA), glutaric aciduria type 1 (GA1) and homocystinuria (pyridoxine unresponsive) (HCU)

Full bloodspot sample on day 5 (ideally).

• What are the implications to that screening if you are admitted to a neonatal unit? Access the screening website for health professionals at: http://cpd.screening.nhs.uk/newbornbloodspot.

Answer: One spot taken on day of admission to NNU (if admitted before day 5), tests for sickle cell disease (SCD), mark as ‘pre-transfusion’.

If taken after a blood transfusion, then you cannot test for SCD for 4 months.

All blood products to have labels with stickers reminding to check bloodspot has been taken. If a blood transfusion is given, delay blood spot for 72 hours post-transfusion, allows PKU, CHT, CF and MCADD to be accurate

Screening to be complete and sent between day 5–8

In event of multiple transfusions, full blood spot must be sent by day 8 regardless, tick ‘repeat box’ and send stapled with pre-transfusion card.

• What advice should be offered to Louise and Ian on how to prevent SIDS while Hugh is on the unit and in preparation for discharge? Access the Lullaby Trust at: www.lullabytrust.org.uk.

Answer: Place Hugh on his back to sleep in a cot in the same room as you for the first six months.

Do not let anyone smoke in the same room as Hugh.

Don't share a bed with Hugh if you've been drinking alcohol, if you take drugs or you're a smoker.

Never sleep with Hugh on a sofa or armchair.

Do not let Hugh get too hot or cold.

Keep Hugh’s head uncovered.  Their blanket should be tucked in no higher than his shoulders.

Place Hugh in the ‘feet to foot’ position (with their feet at the end of the cot or Moses basket).

See: www.nhs.uk/conditions/pregnancy-and-baby/pages/reducing-risk-cot-death.aspx

Safeguarding in a neonatal unit is less obvious than other areas where parents assume full responsibility and care for their children. All neonates are vulnerable and their needs must be considered and infant/family support provided throughout their journey to identify and mitigate issues at the earliest opportunity. Clear-cut safeguarding situations include known maternal substance abuse or domestic violence.

• What early warning signs might alert you in parent behaviour/actions that there may be a safeguarding issue?

Answer: Disinterest in the care of their baby, infrequent visiting and lack of ‘overt caring’.

• What feelings might Louise and Ian have while preparing for and at the actual discharge of Hugh from the neonatal unit?

Answer: Anticipation for the day, excitement, joy, anxiety, mixed feelings as the unit has become ‘home’ and relationships with staff have developed.  Can precipitate anxiety similar to when the baby was admitted.  This anxiety can be related to their being on their own, loss of immediate professional support, full responsibility, questioning of their own ability to care for their baby.

• What parentcraft and support are required to help make a smooth transition home?

Answer: Facilitating the development of the parents’ competence and confidence is central to the role of the nurse and commences upon admission.  Normal care for parents will include mouth care, nappy care, oral and nasogastric feeding and skin to skin contact.  Empowering the parents to ask questions and be involved in ward rounds can provide opportunities to assess understanding and develop further knowledge as required.  A community home visit prior to and after discharge to ensure the discharge environment is appropriate and to provide ongoing information and support, especially if the baby has ongoing health issues.  Follow-up appointments need to be arranged.  Discharge teaching should also include clear instructions of actions (e.g. cardiopulmonary resuscitation) to be taken in the event of the baby deteriorating and how to administer any ongoing medications.