Perinatal Loss Service

For some parents, the death of a baby is the first time they have faced the death of a loved one, and many are unsure of what to do. Doctors and midwives are professionals experienced in the care of bereaved families.

Pastoral care workers can offer support to parents and families following the death of a baby. They are experienced in responding to the emotional, psychological and spiritual needs that arise, and recognise the importance of rituals in the grieving process. They can provide the opportunity for families to have a naming and/or blessing service or a simple prayer. They respect families’ diverse needs and offer support on a denominational or non-religious basis. Pastoral care workers are available every day.

Social workers can assist you, your family and carers in dealing with the emotional, social and practical issues that may arise while you are in hospital. Our social workers are experienced and qualified professionals who practice within the Australian Association of Social Workers’ code of ethics and guidelines.
 

The are dedicated clinical midwives who oversee the care and planning provided for families following the death of a baby. This involves providing support or families while in hospital, and ongoing loss and grief support in the months after discharge from hospital. The Perinatal Loss team can be contacted on weekdays, and we encourage you to reach out with any questions or if needing support.

Whether your baby has died at six or 36 weeks, the loss of your child is an unimaginable pain that sends your life and your emotions in a total spin. Feelings of numbness, shock, disbelief and the sense that it is a bad nightmare that will go away when you wake up is extremely common. It is such a strange experience and one that I can still vividly remember even 10 years on after the loss of my little girl Ruby. I recall feeling as though my world began moving in slow motion–the doctors, the car park attendant and even my relatives all seemed to be moving and speaking in a way that was not the norm.

What can you do to manage that initial grief when you are given the news that your baby has died? Interestingly grief can not only affect us emotionally, but our bodies also react to our feelings, and it is not uncommon to experience physical symptoms. Even the simplest of tasks can be completely overwhelming and too difficult to manage some days. Here are some of the ways you may be affected:

• overwhelming tiredness and exhaustion
• restlessness ‒ feeling unable to sit still
• aches and pains, e.g. headaches, backache, neck pain, rib and chest pain
• anxiety attacks
• difficulty breathing
• loss of appetite
• comfort eating
• finding it hard to sleep or fear of sleeping
• difficulty concentrating.

These symptoms can last for weeks, months or even in some cases years if not managed. Take the first few weeks slowly. Do not have any expectations of yourself or your partner.  Allow the wave of emotions to come (as scary as that may seem) and give yourself permission to feel them. I often have families tell me that they are afraid to allow themselves to really feel those painful emotions, as they are terrified their ‘normal’ self will never return.

Allowing yourself to go to those dark and painful places helps you to move through the grief journey. If you constantly avoid this hard place, your grieving could take longer and cause further physical symptoms. Do not push it aside or cover it up. Cry when you need to cry, wail when you need to wail and hide under the covers if you simply cannot face the world. 

Some days you will only be able to manage simple tasks (if that) and other days you may feel stronger and be able to accomplish more. Do not beat yourself up if you are no longer coping with life as you once did. This will pass in time.

Remember there is no right or wrong way to grieve and every person deals with loss in their own way. If you are concerned for yourself or others, please seek professional help.

The loss of a baby can be one of the most devastating experiences for a family. The ripple effects are enormous. Statistics show that approximately six babies a day in Australia are stillborn, so chances are you could be sitting next to, walking past or sharing an office with someone who has been affected by the loss of a baby. This experience does not discriminate and the overwhelming feelings of sadness and grief are universal.

So how does this grief affect the worker? As mentioned in my previous blog, grief can cause significant physical symptoms to manifest in a person, for example:

• Sleep disturbances;
• aches and pain;
• heart palpitations;
• and loss of appetite are just some of these symptoms that can occur.

Grief can also affect someone’s behaviour. They may:

• become angry quickly;
• seem preoccupied;
• be restless;
• or make mistakes easily.

The challenging issue for workers and colleagues is that each day will be different. The bereaved parent may one day function extremely well, but be withdrawn and irritable the next. Try to be understanding, and allow them the space to do what they can. Placing unrealistic expectations on them will only intensify the grief, causing them to feel isolated and consequently cause a delay in them moving through this grieving period.

Allowing the grieving person to have a reduced workload or different duties for a period of time can be very beneficial. Often the parent is keen to get back to work to feel useful again, but is limited to what they can manage emotionally and physically.

What is the most helpful way to support a bereaving colleague?

• No matter how uncomfortable it may make you feel to approach the person, do it!
• Acknowledge the loss and allow space for the person to talk about their baby (if they want to). There is nothing more devastating as a bereaved parent to have people ignore you or pretend as though everything is back to normal. It isn’t, and it never will be the same.
• Allowing a bereaved parent to mention their child’s name or to talk about their experience is incredibly healing for them, and it helps them feel supported and cared for.
• Ask the person what you can do to help them–do they need a meal, a fun night out to distract them or simply understanding that they may be teary and emotional and not as productive as they once were, prior to the loss.
• Be guided by the bereaved person–some people want hugs and affection and to talk all day about their baby, others are more private and want to be left alone–look for their cues and respect their response.
• If you know the baby’s name, then use it. This also makes the person feel as though their baby mattered and he/she was a special person.
• Whatever you do however, acknowledge the loss by saying something like “I’m really sorry to hear about the loss of your baby, if there’s anything I can do to help you please let me know” or “I heard your baby died and I just want to say how sad I am for you, and when you’re ready I’d love to hear about him/her some time”.

Things will improve for your co-worker and their capacity to concentrate and socialise will increase. Encouraging them to get some professional grief and loss counselling is also beneficial and at times giving them a wide berth and being patient with them will be most helpful. If in doubt, just ask!

Losing a child is one the worst tragedy’s a couple can go through. The consequences of the loss are immense and have a ripple effect on many aspects of a couple’s future. Initially the concept of having another child might feel like the furthest plan in their life. Alternatively for many families it can become a real focus of their future. Yearning for the loss they have experienced can lead them to desiring nothing more than becoming a Mother or Father to a live baby. 

It is important to remember there is no right or wrong decision and every couple is very different in what they decide.

Claire Nicogossian (‘What to expect when you’re pregnant with a rainbow baby’, www.mother.ly, accessed 14/9/2020) highlights the importance of allowing yourself some time to process the loss you have experienced can be beneficial for mental and physical wellbeing. Grief is experienced differently by every person and allowing your body the honour of feeling and being in that grief will aid in providing a positive grief experience for the future. It is also recognised that pregnancy after loss comes with great angst and fear; therefore it is imperative to have the right help and resources to help make this a positive experience. From the time you take the pregnancy test there will be joy mixed with worry, the excitement may quickly turn to the “what if’s” you have been hurt by in the past. This is normal, however navigating the dark place of worry and fear does not have to be lived alone. Other normal emotions and thoughts around finding out you are pregnant again are:

•  Apprehension to get attached to the pregnancy.
• A delay in spreading the news of the pregnancy.
• Reliving the past experience of loss and the possibility of what if it happens again.
• Relationship changes, apprehension from your partner to be too attached to the pregnancy.
• Expecting the worst and hoping for the best.
• Guilt that you are moving on with another pregnancy.

 It is not always a negative experience from the start, however, at some stage through the pregnancy it is common for women to become fearful or be triggered by a date or milestone. Often subsequent pregnancies can feel like they are taking a life time to progress, every day feels like a week for some women. Throughout these weeks it is important to have support that might not be family and friends with outlets for when you are finding times challenging, seeking a supportive GP, obstetrician, counsellor or psychologist to make plans to keep the pregnancy as “safe” as possible. At Mater Mothers we are able to provide a Pregnancy after Loss Clinic (PALC); this allows parents to have longer consults with the midwife, a consistent midwife who knows your history, visits with a consultant, and a variable schedule depending on the needs of the woman. 

Women who have previously had a loss might find appointments related to their subsequent pregnancy very difficult, this can be due to the possibility of the appointment not going as planned and hoped for. Many times mothers have verbalised that they proceed into appointments with so much anxiety and worry they expect the worst news and are relieved when the find out their baby is appearing healthy and well. This can be a very normal coping mechanism and often unless you have experienced a loss can be hard to comprehend. You may need to find an antenatal care provider that makes you feel comfortable and supported throughout your journey. 

Rachel Lewis (2016, ‘6 things you do differently in pregnancy after loss’ http://stillstandingmag.com, accessed 14/9/2020) addressed the importance of speaking about your worries and apprehensions to your doctor or midwife will be very helpful; sharing your feelings and concerns with your partner is one of the first lines of support for the pregnancy. Subsequent pregnancies can feel like you are climbing a mountain every day to achieve the Rainbow Baby you so desire, it’s okay to admit it is hard, reaching out for help and resources will honour you the best way possible. Contacts to help you in subsequent pregnancies include:

• Mater Mother’s Hospital, Bereavement Team/Pregnancy After Loss Clinic 07 3163 6026
• Pregnancy Birth and Baby Support Line 1800 882 436
• Health Direct 1800 022 222
• PANDA 1300 726 306
• Lifeline 13 11 14
• Red Nose 1300 308 307

The loss of a hoped-for child can be devastating and overwhelming for all involved and no less so for a big brother or sister that was eagerly awaiting the arrival of a new family member. Below is some information about how to help support children through this time. 

Many parents feel they don’t know where to start when explaining what has happened around a stillbirth or death to children. We acknowledge it can be a very difficult conversation to have and can feel very overwhelming, children are very perceptive and will usually know that something has changed in the mood or atmosphere; so here is some advice for that time:

• A quiet, small and familiar space. 
• Having one or more familiar adults present that can provide clarification, love, support, cuddles or step in if one person gets too upset.
• Lots of reassurance, cuddles and love.
• Open, age appropriate and honest communication about the situation and what happened, try to keep the information simple and repetitive, as to not confuse children. 
• Avoid using words like sleeping/ lost/ gone/ these can cause confusion and anxiety in children as they associate these words with other things and may become frightened by them long-term. 
• Although it might be hard, try to use words and phrases like “our baby has died”, which means her heart is no longer beating and he/she does not have any pain. Factual information can be a helpful way to explain to children what has happened. 
• It can be helpful or important for some families for the sibling/s to meet a baby that has passed. Ultimately it is your decision as parents as to whether this is right or wrong for your family but try to be led by your children if possible. Try and explain to your children beforehand what will happen so they know what to expect. Sometimes using a picture of your child that has passed as a starting place might feel more comfortable for you. Siblings can also be included in memory creation e.g. photographs, these photographs might be something long term that helps a sibling feel connected to their brother/sister. 
• Don’t be afraid to show your emotions in front of your child, a lot of parents worry that this will upset their child but it actually helps them to see what healthy grieving looks like. Explain to them that when you are sad, e.g. crying and being upset is a normal thing and you are sad and that’s because our baby has died. O’Leary and Gaziano (2011) recognize that when parents are present to model, acknowledge and legitimize grief for bereaved siblings it can lead to greater understanding and empathy growth. 
• Talk to your children about your baby that has passed. Say their name, what you had hoped for, for their dreams and future by talking about them you will give your child the confidence and permission to also share their thoughts and feelings. Webb (2010) explains that denial, anger, guilt, sadness and longing are felt by young and old alike in response to the death of a loved one. 

Keeping the memory alive of a baby that has passed can be an important part of the grieving process for all family members. Some things that might help your child feel connected are visiting your child’s grave or resting place and placing flowers or presents on special days. Planting seeds or flowers and watching them grow. Special Christmas decorations; just for your baby or mementos at times of the year, so they are included in family rituals. Visiting a special place and spending time to talk about your baby that has passed. The creation of meaningful memories has been found to be important in helping siblings in the grief process (Bartellas & Van Aerde, 2003). 

Remember you are doing your best and there are no right or wrongs to follow during this time of grieving. The Mater Mothers Bereavement Team is always here to support you and your family during this time with resources and information around this topic.

It is not uncommon for mothers who are overwhelmed with grief after losing their baby to develop significant anxiety and depression.

Losing a baby through stillbirth or a neonatal death can be one of the most devastating experiences one will ever have to endure during a lifetime. Huberty et al. (2014) state that women may experience significant mental, physical and social maladies, including alterations in appetite and sleep patterns, guilt, shame and depression after giving birth (both live and stillbirth). According to Gold et al. (2016), bereaved mothers are seven times more likely to have symptoms of post-traumatic stress disorder (PTSD), four times more likely to be diagnosed with clinical depression, and twice as likely to be diagnosed with an anxiety disorder. The long-lasting adverse effects of stillbirth may even impact the health of the mother and child in subsequent pregnancies.

Research has shown that there are numerous counselling strategies and programs, as well as medical interventions that health care professionals can draw upon to aid depression sufferers. One of the simplest techniques that has shown to improve depression is physical activity. Huberty, Leiferman, Gold et al. (2014) conducted a study of 175 women who had experienced stillbirth, to look more closely at the impact of physical activity on their symptoms of depression. Out of these women, those who participated in physical activity reported significantly lower depressive symptoms compared to women who did not participate in any form of physical activity. It is important to return to exercise and general fitness programs gradually after having a baby. Short, gentle sessions only are advised as the muscles recover. If an activity is painful or you find yourself holding your breath, stop immediately and rest. Slow and gentle sessions are recommended. Physiologically the ligaments and support structures of the body are not back to full strength for up to a year postnatally, so activities such as walking, swimming, aqua aerobics and pilates are a perfect option. Avoiding high impact activities that place too much strain on the supporting ligaments is preferable. Overall, the study by Huberty, Leiferman, Gold et al. (2014) established that physical activity may serve as a unique opportunity to help women cope with the multiple mental sequelae after a stillbirth. It can improve depressive symptoms in a number of populations and has been shown to be more efficacious than psychiatric medications (Herring, et al., 2012). Women in the study reported using activities such as walking, jogging or yoga interventions to cope with their depressive symptoms successfully, and when active felt better physically, had a better mindset, and had more energy, which also impacted subsequent pregnancies. (Huberty, Coleman et al. 2014).

References:

• Gold KJ, Leon I, Boggs ME, Sen A. Depression and posttraumatic stress symptoms after perinatal loss in a population-based sample. J Womens Health. 2016;25(3):263–9. 
• Herring, M.p, Puetz, T.W, O’Connor, P.J, Dishman, R.K (2012) Effect of exercise training on depressive symptoms among patients with a chronic illness:a systematic review and meta-analysis of randomized controlled trials. Arch Intern Med 72:101-111. 
• Huberty, J.L, Coleman J. Rolfsmeyer, K, Wu S., (2014). A qualitative study exploring women’s beliefs about physical activity after stillbirth. BMC Pregnancy Childbirth 14: 1471-2393

A memory box helps to convey understanding and a sense of “not being alone”. It helps families who have suffered the overwhelming loss of their child to create memories, by providing a place to keep precious items such as hand and foot prints or a lock of hair. The memory box reinforces that their child existed and he or she is loved and remembered. 

Precious Wings is a Brisbane based charity, co-founded by Kerry Gordon after losing her beautiful boy Toby who was stillborn in 2011. They are passionate about helping families who are faced with the devastating loss of a child. 

Precious Wings donate Memory Boxes to hospitals in Brisbane and the Gold and Sunshine Coast and these are given to families who lose a baby of any gestation. 

Each box is donated in loving memory of a beautiful child gone too soon. The boxes and their contents become very treasured possessions for the bereaved parents. Something beautiful to hold onto when leaving hospital with empty arms. 

The boxes are prepared by other bereaved families in memory of their own lost child and contain gifts such as Forget Me Not seeds and a scented candle for times of reflection. These families understand the devastation such a loss means and are thus able to convey an enormous amount of love, hope and understanding with the giving of each memory box. 

Precious Wings rely heavily on community support, corporate donations and their own fundraising activities to maintain the service to hospital and families. Also, many of their donations come from families who have received one of their memory boxes or from their own family or friends who have seen the comfort they provide. 

If you would like to support the work they do or donate memory box/es in honour of your precious child (or one close to you) or your loved one please visit their website.

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