What Do Bereaved Parents Want Health Professionals to Know?

• All hospitals need to develop protocols and guidelines of what should be done after a baby dies and by whom.

• All professionals need to be trained in grief and loss so that all acknowledge the death and the parents’ grief and do so in an appropriate, non-judgmental manner.

• Information needs to be given to parents clearly and slowly and may need to be repeated. Information should to be given as needed, not all at once. The time between getting the bad news and the induction is an optimal time to be given information about grief and how to prepare for delivery as parents are more able to comprehend the information then.

• Parents should be given options for treatment and the pros and cons that will help them make decisions. Decisions should not be made for them - this is disempowering.

• Some parents deeply regretted not having an autopsy and will never know now why their baby had died. Others felt that they were not given alternatives to an autopsy such as non-invasive tests of the placenta or x-rays. Knowing why their baby died is helpful for the grieving process and can lesson anxiety during the next pregnancy.

• The use of drugs should be minimal – the memory of the birth will become very important. Parents need to be able to put together all the facts and events like a jigsaw puzzle.

• Discussing organ donation with parents needs to be done very sensitively and not when parents have just been told of the death of their baby. Acknowledgement that their baby has just died is crucial at this time.

• Bad news should be provided in a sensitive, non-clinical way and support needs to be given.

• Bad news should not be given to a pregnant mother on her own if possible. Support should be given immediately and an offer to ring a carer - partner, family or friend.

• It can be very helpful to the parents if family and friends are encouraged to see the baby too and are also given information about the grief process.

• It creates more anxiety if parents are given differing or contradictory opinions. Parents want facts and alternatives, and informed, considered opinions. Specialists need to introduce themselves fully so parents can ask them questions about their child’s treatment. They should encourage parents to ask questions.

• Privacy for bereaved parents is essential. Delicate matters should be discussed in private and not in shared rooms. This helps all patients – other patients should not have to listen to discussions about funerals and burials options. Screens need to be used in shared rooms. Bereaved parents do not want to be put in a room with pregnant women or in earshot of women in labour.

• Bereaved parents will need time on their own to start to comprehend what has happened but should not be left alone. Staff need to tell parents they are there as needed – nearby and available.

• The baby’s name should be used at all times.

• Information about the death needs to be released to all appropriate persons and departments in the hospital so that parents are not needlessly having to tell staff of the death. A sign needs to be put on the door and files need to show this clearly. Night, catering and agency staff and cleaners often don’t know what has happened.

• Parents find it very helpful if staff express their own sadness at the death, crying with the family, sending cards and attending the funeral.

• Parents need to be given as much of a say in decisions regarding their baby as possible – for example, dressing their baby in their own clothes. They will have so few opportunities to parent their baby that each small decision they can make is important. They feel disempowered when not encouraged to participate in the care for their baby. They need acknowledgement that they are parents even though their baby has died. ‘The nurse said to me you’ve had a beautiful baby. Can I cuddle her? You would ask for permission if the baby were alive … this was such an important moment for me. My baby was given dignity and respect. I was acknowledged as a mother.”

• Hospitals need to provide clothing of the appropriate size for premature babies so parents can dress and photograph their baby.
  
  
• Photos and other mementos should to be kept by the hospital until parents are ready to receive them. Parents need advice in creating mementos and for staff explain that having photos and mementos would be beneficial later in their grief.
  
  
• Parents should to be told how other bereaved parents have said how helpful it would be for their bereavement if they viewed, held, dressed and spent time with their dead baby. Staff need to be ‘sensitively persistent’ and encouraging about this until the bereaved parents are ready to ‘hear’ them. Often parents are fearful of seeing and holding a dead baby- they may need staff to describe what they will see and feel.
  
  
• Parents should to be encouraged and given as much time as they need to spend with the baby in a private room. The cot should not be removed. Partners should be allowed to stay overnight if desired.
  
  
• Staff should allow parents to perform rituals for their baby and given support and information to do so. Parents need to be encouraged to plan the funeral or memorial service themselves.
  
  
• Staff should make sure all clothing used for the baby needs to be returned – they become precious to parents.
  
  
• More sensitivity is required in cases of a death of one or more of a multiple pregnancy while still carrying a live baby.
  
  
• Parents deciding on a medical termination for abnormality need sensitive and non-judgmental support to minimise the guilt that follows this decision.
  
  
• Registration of the birth is important – so parents whose baby is nearly 20 weeks gestation and will die may benefit from waiting till then for a termination or induction.
  
  
• Information about the death of a baby should to be passed on to CentreLink, Maternal Health Centres, etc so that parents are not contacted by nurses wanting to make an appointment to visit the baby or publicly having to explain that their baby had died. Assistance should be given re maternity allowances and legal matters so that parents don’t have to go over the story again and again.
  
  
• Antenatal classes should discuss the possibility of stillbirth and information on warning signs provided.
  
  
• There needs to be separate antenatal classes for those having a subsequent baby.
  
  
• Information about drying up the breast milk and breast pumps should to be readily available for bereaved mothers, not just those with live babies: “I was told my wife couldn’t have the pump because others with live babies needed it more”.
  
  
• Information about postnatal depression, the physical wellbeing of the mother, hormonal imbalances, etc need to be provided.
  
  
• Support when leaving the hospital is crucial: “The staff accompanied us to the car and ensured that we didn’t bump into any parents bringing home their baby – they were kind and sensitive.”
  
  
• Staff should follow up the family if they have promised to do so with referrals, phone calls, etc.
  
  
• Staff should talk to families about their options for when they leave the hospital – parents can take the baby home rather than having the baby taken by the funeral company, funeral/memorial choices. Parents should be able to leave the baby at the hospital for several weeks so they can have time to decide what to do.
  
  
• A streamlined process regarding referrals is needed. They need to be made as soon as possible. Parents are in shock and often don’t know what they want and need. Bereaved families often cannot ring for support when they return home so a referral made when the parents leave the hospital ensures that support will occur.
  
  
• Follow up with families is important: Staff can ask again if a referral is needed at the six week appointment – this is often when parents feel the reality of the death. Parents may only then agree to a referral.
  
  
• Extra support is required during the pregnancy and birth of a subsequent baby or after multiple miscarriages. The file needs to be clearly marked and appropriate staff in other departments eg ultrasound staff, need to be informed. If possible staff who know the family should be assigned to them and see them before the birth.

What do bereaved parents say?

“I think that the information is not being passed on, when we first went in to hospital we knew we were going to lose him and there was no chance of survival. …we got a couple of small pamphlets then after he was born within the first hour that’s when we were given a package, that’s when we got the SIDS and Kids (now known as Red Nose Grief and Loss) package and information but by that stage, my wife’s exhausted and I’m knackered, not interested, we are balling our eyes out and we are not really taking in all that information. So the hospitals aren’t giving the information out at the right time…I would have preferred to receive it all prior going into the hospital…we found out in the scan, we knew we were going to deliver and that’s when the information should have been given to us, prior to delivery…”

“I would like professionals in the hospital to know that they should be asking parents can we contact SIDS and Kids (now known as Red Nose Grief and Loss) for you so that we then reach out and chat, because it’s so hard to pick up the phone and go through the pamphlet to find the phone number”.

“...90% staff were absolutely fantastic, but the one that delivered our son was absolutely atrocious…when he was born the midwife said 20 mins afterwards are you taking the baby home to bury him or is this for hospital disposal and that’s the exact words she used…fortunately the day after a counsellor came in and asked how we were…this poor counsellor copped an absolute hiding but it was the best thing ever because she fixed everything…”.

Last reviewed: 22/11/24