We also got a sympathy card from the hospital, personally signed by the doctors and nurses who had cared for me.
Once home many parents find that the support they need is not available for as long as they need (Barkway, 1996).
Planned follow-up after the death of a baby can improve general health outcomes for parents, particularly those considered to be at risk (Murray and Murray, 1994). Hospitals generally don’t have the funding for ongoing support however it is important that some follow-up is included in the care of bereaved
parents (especially if they go home early) including general support and assessment, referral, and early detection of problems.A midwife involved in the delivery and after care has a special link to these parents and should be involved in follow-up.
It is ideal for contact to continue at regular intervals for the first year following the bereavement.Allow the parents to control the level of their follow-up. Leave a telephone contact and ask for their telephone number in return.The midwife who is to be involved in the follow-up should have a meeting with the parents prior to discharge to gain permission to visit them at home and arrange times when phone contact can be made.
The ideal contact pattern is:
• several times in the first few weeks for emotional support and physical assessment
• six weeks after the birth for a postnatal check (usually done by a doctor); a check on the couple’s emotional and physical health; discussion of the autopsy, recurrence risks and/or referral for genetic counselling; likely care in future pregnancies; and referral to a support group
• at 3–6 months for a general chat and the opportunity for parents to ask questions
• on the 12-month anniversary — face-to-face or telephone contact and/or send a card.
In addition
• Send a letter to the GP including information gained from the six-week check, together with relevant further investigations, referrals and suggestions for management of future pregnancies.
• If the loss was a neonatal death a follow-up appointment with the neonatologist is also usual.
What do you do during contact?
If you are visiting the parents in their home, tell them why you are there and how long you will stay (less than an hour) as they may be unsure as to the purpose of your visit. Allow them to talk about what has happened and ask questions if they wish. It is helpful if you just listen. Provide a time to
Specifically ask about sleep. Many bereaved parents find it very hard to sleep.
Reassure them that this is normal.They may require sedatives but it is not the best option. Sleeping tablets do not usually provide a natural sleep and most people do not wake feeling refreshed. Many bereaved parents find that sleeping tablets do not work. If parents can be reassured that insomnia is a very normal part of grief, that it will settle and they will eventually be able to sleep peacefully again, then their requirements for artificial assistance may be limited.
REFERENCES
Barkway P(1996): Parents’ experience after Perinatal death. Paper presented to SANDS 6th National Conference,Adelaide, October 1996.
Lloyd Karon (1992): A Part of You Dies.Video produced and directed by Karon Lloyd and available from her at PO Box 263, Blaxland, NSW 2774.
McPhee A (1995): Untitled paper presented to SANDS seminar,‘Perinatal Death:
Implications for the Caring Professions.’Adelaide.
Moscarello R (1989): Perinatal Bereavement Support Service:Three-year review.
Journal of Palliative Care5 (4): 12–18.
Murray J, Murray M (1994): When the Dream Is Shattered. Adelaide: Lutheran Publishing House.
Thearle MJ, Gregory HJ (1992): Evolution of bereavement counselling in sudden infant death syndrome, neonatal death and stillbirth. Paediatr Child Health 28 (3) June: 204–209.
Wright B (1993): Caring in Crisis. Edinburgh: Churchill Livingstone.
INTERESTING RESEARCH ARTICLES
Bluglass K (1992):The sudden infant death — psychological consequences and role of the medical team. Annales Nestlé 50: 81.
Bourne S, Lewis E (1991): Perinatal bereavement: A milestone and some new dangers BMJ 302, 18 May: 1167–8.
Calhoun LK (1994): Parents’ perceptions of nursing support following neonatal loss. Journal of Perinatal and Neonatal Nursing 8 (2): 57–62.
Dyregrov A (1990): Parental reactions to the loss of an infant child: A review.
Scand Journal of Psych31: 266–280.
Kavanaugh K (1997): Parents’ experience surrounding the death of a new-born whose birth is at the margin of viability. JOGNN Jan./Feb.: 43–51.
Leon I (1992): Perinatal loss: A critique of current hospital practices. Clinical Paediatrics31: 366–374.
Mander R (1991): Midwifery care of the grieving mother — how the decisions are made. Midwifery 7 (3): 133–42.
Primeau M, Lamb J (1995): When a baby dies: Rights of the baby and parents.
JOGNN24 (3): 206–8.
Schwab R (1996): Gender differences in parental grief. Death Studies 20:
103–113.
Sweeney M (1997): The value of a family centered approach in the NICU and PICU: One family’s perspective. Pediatric Nursing 23: 1.
RECOMMENDED READING
Arnold J, Gemma P (1994): A Child Dies, A Portrait of Family Grief 2nd edn.
Philadelphia:The Charles Press.
Crowther R, Brabin P (1986): Your Baby Has Died. Melbourne: SANDS Victoria.
De Frain J (1991): Stillborn: The Invisible Death. Lexington: Heath/Lexington Books.
Fumia M (1990):A Child at Dawn, the Healing of a Memory. Notre Dame:Arreman’s Press.
Kohn I, Moffitt P-L (1993): A Silent Sorrow, Pregnancy Loss. Guidance and Support for You and Your Family.New York: Bantam Press.
Lord JD (1987): When a Baby Suddenly Dies. Melbourne: Hill of Content.
Schwiebert P, Kirk P (1985): When Hello Means Goodbye. Portland: Perinatal Loss.
Stewart A, Dent A (1994): At a Loss. London: Bailliere Tindall.
Vredevelt P (1995): Empty Arms. Sisters: Multnomah Press.
With apologies to parents of higher multiples, in this chapter I have referred to multiples generally as ‘twins’, purely for ease of writing and reading.
DEFINITION
A study by Chitrit et al. (1999) found the perinatal mortality rate in twin pregnancy is 7–8 times higher than in singleton pregnancy. They also found that extreme prematurity accounted for nearly half of the perinatal death rate in twins.
Expectant parents of twins often feel special. Frequently family and friends show extraordinary interest in the couple and ‘fuss’ over the growing pregnancy.When one or more babies dies, either during the pregnancy or in the perinatal period, the parents lose not only their baby/ies but their ‘specialness’.
L O S S I N A M U LT I P L E
P R E G N A N C Y
I didn’t see ‘one baby’, I saw ‘not two’.
(Kollantai, 1994)
Midwives caring for families who have lost a twin must include in their care all the same routines as when a singleton baby dies, and must carry out ‘multiple-specific’ practices as well.
BREAKING BAD NEWS
The phrase ‘Well at least you’ve still got a baby’ rang in my ears for weeks, even months! (Schulz, 1998)
It is important to break bad news in a tactful, sympathetic manner. Avoid implying that the couple are in any way lucky to have a surviving baby. The bereaved parents do not usually feel fortunate that one of their twins has lived.
Most commonly they feel distressed that one of their babies has died.
SUPPORT WHILE IN HOSPITAL AFTER BAD NEWS IS BROKEN
The nursing staff had no idea what to do with me.They originally put me in a room with another woman who was carrying twins — except hers were both alive! I felt so angry, hurt and cheated! I was amazed that the staff could be so insensitive to my situation. (Schulz, 1998)
If the mother needs to be hospitalised for any reason then it is best to ask the mother where in the antenatal ward she would like to be situated. Some may wish to be with other mothers who have living twins, others may wish to avoid these mothers altogether.