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Pregnancy loss. Karen Stoyles April 2013. Immediate Care & Support. How many babies die & why?. Stillbirth rates (1:200) in the UK among the highest in high income countries (33/35) Despite availability of PM 50-70% of SB categorised as unexplained ( unavoidable).
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Pregnancy loss Karen Stoyles April 2013 Immediate Care & Support
How many babies die & why? • Stillbirth rates (1:200) in the UK among the highest in high income countries (33/35) • Despite availability of PM 50-70% of SB categorised as unexplained ( unavoidable). • 10% SBs associated with congenital abnormality • 30%SBs associated with IUGR (Inclusion of IUGR in SB classification = drop to 15% in unexplained SB) • Most SBs occur in “low risk” pregnancies • Smoking (inc. passive) risk by 30% • 500 die every year due to an event during birth • NND rates 20% in 10 years (1:300)
Risks of Stillbirth • IUGR (x 4 if detected, x 8 if not detected) • Reduced fetal movement • Pre-eclampsia • Smoking (10 a day = double risk ) • Obesity (BMI 30 twice risk of BMI 25) • Infection • Multiple pregnancy • Diabetes • Mother <20 or >35 years (>40 =double risk ) • Previous stillbirth (x 2 risk) • Obstetric cholestasis • Socially deprived Preventing Babies` Deaths, Sands. 2012
Role of the Health Professional • Validate the woman`s feelings of loss • Recognise the baby as an individual • Encourage acknowledgement of birth & death • Educate about grief • Give information about available choices • Take time to listen • Provide good physical care • Make the birth as positive an experience as possible
Effective Care • Treat parents & baby with respect & dignity • Continuity of carers where possible • Make no assumptions • Support parents to make their own decisions • Prepare parents for labour and delivery • Clear, sensitive & honest communication • Avoid making reassurances which may turn out to be false • Empower parents to make choices • Use the baby's name • Resist the temptation to give advice unless specifically asked for
Communication • Give information in small amounts • Choose words sensitively – no medical jargon • Check for understanding • Look at the person • Actively listen • Use names • Smile – if appropriate • Ask open questions • Admit it when you don't know the answer • Be non-judgemental • Be genuine – visual & verbal behaviour should tell the same story • Closing the consultation – agree the next steps
Not only Midwives work with pregnancy loss Why there is so much paperwork
Pastoral Care • Chaplain will perform a Blessing Service at anytime • The same Chaplain will conduct funeral if parents wish • Chaplains will provide ongoing pastoral care if required • Annual Remembrance Service • Also provides support for staff • Stepping Stones support group
Bereavement Care Co-ordinator • Not a counselling service • Organises PM arrangements & transfer of baby to Bristol • Liaises with funeral directors if hospital funeral • Gives information about legal requirements following a death • Rarely sees parents during hospital stay • Service operates Monday – Friday 9-4
MBRRACE-UK • Replaced MNPN / CEMACE - commenced January 2013 • Aim is to provide robust information to support safe, equitable, high quality, patient centred health care • Now includes late fetal losses & TOP (>22/40) • More detailed information gathered inc. maternal carbon monoxide level (all women) • Data reported by nominated MWs registered with MBRRACE-UK (Ward managers @ RCHT) • Projects for 2013: • - Maternal Sepsis • - Congenital Diaphragmatic hernia • -
Required Paperwork Good record keeping is an integral part midwifery practice. It is not an optional extra to be fitted in if circumstances allow. NMC
STORK • SB & NND require full input of delivery details • SB requires registration for CR & NHS numbers • < 24 weeks cancel pregnancy (STORK Options ) • Generate GP discharge letter (as for A/N discharge) prior to cancelling pregnancy
Stillbirth & NND Certificates • Stillbirths (>24 weeks) - midwife • Neonatal deaths of any gestation (inc TOP) - Dr • Parents need stillbirth / death certificate to register their baby • Funeral not possible without registration • Forms must be complete with no omissions • Completed by same person • Name printed clearly with NMC/ GNC number
Cornwall Crematorium Committee MISCARRIAGE & top stillbirth Forms required for burial or cremation. NND requires same cremation forms as an adult.
Certificate A • Certificate A must be completed by two doctors before TOP can be legally commenced. • File in notes
Abortion Notification to DoH • Dept. of Health must be notified of all TOPs • Form has to be signed by the doctor taking responsibility for the TOP and who signed Certificate A • Clinical details completed by midwife when TOP complete • Reason for TOP as on Certificate A • Needs to be posted to the Chief Medical Officer within 14 days – do not leave in the medical notes.
Consent for Funeral < 24 weeks • Required only for miscarriage & TOP <24 weeks who do NOT show signs of life. Law does not allow NND & SB to have collective cremation • Not required if parents / funeral director take the baby from the ward • Form must accompany the baby to the mortuary (or histology). The baby may be returned if no form. • Requirement of the Human Tissue Authority
Notification of Stillbirth & NND • Required for all pregnancy losses after 24 weeks. • Post form to Child Health Department • Do NOT file in medical notes
Child Death Review • Complete for all deaths < 18 yrs • Referrer = midwife • Agency = RCHT • Follow up forms may be sent to midwife later for further detail • Fax to Child Death Review Co-ordinator
Deceased Baby Care Record • Provides system of tracking babies bodies whereabouts (DoH 2006) • The name of the Porter taking the baby to the mortuary must be recorded • Provides record of patient's property
Post Mortem Consent Request Parents must be given a copy Must be fully completed with copies of scans attached
Investigations When a baby dies almost every parent will want to know why. Sands 2012
Post Mortem • Most Dr / MWs underestimate the benefits of PM • Some make assumptions that parents will not want PM • Some avoid seeking consent for fear of adding to parent's distress • 2 x parents regret declining PM than consent • Essential that staff offer to all parents (>16 weeks) • 2013 - National consent form • No longer delays in PM • Parents can see baby following PM • Baby returned before results available • Results may take 6-12 weeks
Cytogentetic tests • Parents to be given verbal & written information • Separate consent form • May only be taken by midwife or doctor certified to do so • Samples must be taken in Daisy Nursery (HTA licensed satellite mortuary) • Log book must be completed for audit trail • Use skin biopsy medium – do not use CVS medium (unless in an emergency) • Inform ward clerk when stock low
Maternal Investigations • Need to be done ASAP after diagnosis of IUD for best results (7% SB caused by infection) • A/N Kleihauer on all women • Anticardiolipins & Lupus tests to be sent to lab within 60 minutes • Not required for TOP (G & S / FBC only)
Practicalities Good care cannot remove the pain of loss, but care that is inadequate or poor makes things worse and affects a family's wellbeing both in the short and long term. Sands 2012
On Diagnosis • Ensure that the woman is not on her own • Do not leave her to wait with pregnant women • Scan only by appropriately trained staff • Facilitate a second scan if woman requests • Ensure she is seen by a senior doctor ASAP • Record maternal observations • Gain consent & take blood tests • Cancel appointments • Inform Fetal Medicine, Diabetes/Drug & Alcohol Specialist Midwife • Ensure woman understands what happens next
Admission • Plan admissions later than IOL admissions • Prepare the Daisy Suite / delivery room • Avoid delays (unless parent's wish) • Determine the wishes of bereaved parents • Ensure analgesia is prescribed before it is needed • Warn that the labour / delivery can be unpredictable • Aim for one to one care in labour • Complete checklists as you go
Post delivery • Give P/N care as standard normal delivery • Document care in notes • File paperwork that should be in the medical notes – do not leave in folder or green notes (If woman readmitted to Tolgus / EGU notes get separated ) • Label baby (initially with handwritten label) • On Mortuary id label - Use labels at the loose end first so that the label can be trimmed • Do not use up all red sticky id labels & do not cut off • Send discharge letter to GP before cancelling STORK • Contact CMW & arrange follow up care
Cold Mattress • Cooling the baby slows the deterioration process • Give parents more time with their baby if they wish it • Ensure antibacterial solution is added to water and system drained after use
Babies born alive at threshold of viability • A baby who shows any sign of life at any gestation is regarded as being born alive (WHO 1992) • Legal obligation to provide appropriate care and not cause suffering. • The mother should be told what to expect when the baby is born • If the baby can not survive inform parents that the baby will be given comfort care if born alive • Warn the parents that some babies who are born too early to survive may make movements at birth for sometime • Call doctor (not Paed.) to certify
Funerals < 24 week Gestation STillBirth & NND • No legal requirement to bury or cremate fetal remains • RCHT will arrange & pay for basic funeral • Communal burial or cremation is permitted • Ashes can not be guaranteed • Environmental Health Dept. and Environment Agency give advice about burial on private land • Responsibility of parents • RCHT will arrange & pay for basic funeral • Parents may be eligible for a Social Fund Funeral Expenses Payment • Environmental Health Dept. and Environment Agency give advice about burial on private land • Must notify the Registrar of births & deaths of date & place of private burial
Making Memories The greatest gift you can give a bereaved parent is the gift of remembrance
Seeing & Holding the Baby • It must be the parents choice (NICE agreement 2010) • If parents are unsure: - Show photographs first - Put the baby in a cot nearby first - Staff offer to hold baby & stay with parents - Ensure parents do not feel pressurised to hold their baby • Possible factors in parent's choice: - Cultural or religious beliefs - Fear of seeing a dead body - Coping style of not confronting stressful issues
Acknowledgement of <24wk baby • Recommended by SANDS, RCOG, and Dept. of Health as there is no legal recognition of a baby before 24 weeks.
Photographs • Aim for photos to be “album worthy” • Photos of the baby in natural positions • Photos with parents / family • Focus on relationships not just baby • Photos of toys, clothes, flowers etc • Detail shots of every part of the baby (ears, lips etc) • Use something to give perspective of size (ring, finger ) • Avoid flash / yellow based colours • Give parents the camera memory card • Record in camera log book
www. gifts of remembrance. org www.toddhochberg.com
Hand & Foot prints • Use inkless wipes to create prints. Use card provided • Make clay imprints using kits donated by Ella's Memory
Remembrance Garden • Memorial fountain with pebbles written by parents • Daisy Suite now has entrance & garden separate from Remembrance Garden • Open 24/7
Support • Stepping Stones
Pregnancy loss & Midwives In an area of practice that requires skilled emotion work, self neglect can limit our ability to respond to the needs of our clients and colleagues. Kenworthy & Kirkham 2011
Effect on Staff • Shock on diagnosis of death / abnormality • Accumulated grief / sharing a loss • “Guilt” that unable to give parents a healthy baby • Unable to give care that they want to (time constraints) • Balancing engagement & detachment • Additional stress of paperwork + caring for bereaved mother • Impact on memory & clerical skills • Emotional “juggling” in caring for more than one woman • Fear of “not doing it right” • Coping strategies of avoidance or isolation • Conscientious objection to TOP
Support for Staff • Practical help in care of bereaved woman / baby • Colleagues taking on other work to free up time • Acknowledgment of emotional impact on midwife • Reflection – “closure conference” • Peer support – talk it through with the right colleague • MWs need to know their limits of supporting bereaved • Good role models • Senior MWs need to be mindful of burden placed on juniors • Sands, ARC, Child Bereavement Trust support lines • RCHT Pastoral Care team • Skilled support via Occupational Health • Supervision • Training – www.e-lfh.org.uk (End of life care ) • Bereavement Care Network