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Making a difficult decision A booklet for parents who have received a diagnosis of an abnormality in their unborn baby www.sands.org.au 1300 0 sands (1300 072 637)


Table of Contents Introduction ....................................................................................................................................................... 5 Feelings and reactions after finding out...................................................................................................... 6 Getting the right information ........................................................................................................................ 7 What are the options? .................................................................................................................................... 8 Making a decision .......................................................................................................................................... 9 What do I need to know about ending the pregnancy? .........................................................................10 Legal rights and requirements ................................................................................................................10 Registration ............................................................................................................................................10 Burial and cremation ............................................................................................................................10 Methods of ending the pregnacy ................................................................................................................11 Ending the pregnancy surgically ..............................................................................................................11 Ending the pregnancy by induction .........................................................................................................11 Ending the pregnancy – other factors to consider ....................................................................................11 Autopsy ........................................................................................................................................................11 Where will the surgical procedure take place? .....................................................................................12 Seeing and holding your baby ....................................................................................................................12 Taking photographs of your baby ...............................................................................................................13 Preparing to leave the hospital ...................................................................................................................13 Leaving the hospital ......................................................................................................................................14 Creating memories .......................................................................................................................................14 Planning a funeral .........................................................................................................................................16 Feelings – after your baby has died ...........................................................................................................16 Your grief .........................................................................................................................................................17 Reactions of others ........................................................................................................................................18 What to tell children .......................................................................................................................................18 The future ........................................................................................................................................................19 Where to go for more help ..........................................................................................................................20 Making a difficult decision: a summary ....................................................................................................21 Glossary..........................................................................................................................................................22 References......................................................................................................................................................23

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Acknowledgements Sands would like to thank and acknowledge the work of SAFDA (Support After Fetal Diagnosis of Abnormality), as well as the Centre for Genetics Education NSW Health and AGSA (Association of Genetic Support of Australasia). In 2006 SAFDA produced a landmark booklet ‘Support After Fetal Diagnosis of Abnormality, Diagnosis of abnormality in an unborn baby – The Impact, Options and Afterwards,’ which was critical in the development of this resource. This booklet was written in consultation with parents who have received a diagnosis of an abnormality in an unborn baby. Sands is grateful to these parents for the courage and generosity they have showed through sharing their stories and providing feedback. Thank you also to the following professionals who assisted with the development of this booklet: Prof Sue Walker (Maternal Fetal Medicine specialist), Dr Gino Pecoraro (obstetrician), Dr Judy Ford (geneticist) and Dr Janet Draper (obstetrician). Disclaimer In this booklet we describe common experiences for parents who have received diagnosis of an abnormality in an unborn baby. Information and suggestions in this booklet are guided by our experience in helping families affected by this potentially distressing event. Sands acknowledges that values and beliefs surrounding death vary across cultures, religions and personal backgrounds. Reactions to death are unique. Some responses may not be included in this booklet, while some of the offered suggestions may not suit everyone. However, Sands offers information and support without judgement. Professionals have reviewed the information contained in this booklet. It is provided in goodwill, as a public service. However, Sands makes no representation or warranty as to the accuracy, completeness or appropriateness of the information, in respect of which readers should make their own enquiries. To the maximum extent permitted by law, Sands disclaims all liability and responsibility for any direct or indirect loss, damage or injury which may be suffered by any person in connection with this booklet, including any person relying on anything contained in or omitted from this booklet. Should you have further questions or concerns, Sands can assist – please refer to the ‘About Sands’ section at the back of this booklet.

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Introduction All parents hope for a healthy baby, and tests that screen for abnormalities and medical conditions usually provide reassuring results. Occasionally, however, a serious problem is detected. This news usually comes as a shock to parents and may shatter the dreams they had for their developing baby. Decisions regarding the future of the pregnancy need to be made. For many parents this information can be the beginning of a very difficult, often devastating, sequence of events. If you are in this situation, you may find yourself confronted by many painful questions, such as ‘Would we be willing and able to support a child with a disability?’, ‘Could we end a much wanted pregnancy?’, ‘Should we carry a pregnancy with a fatal diagnosis to full term?’ and/or ‘How much pain and suffering will our child have if he or she is born alive?’. These can be complex moral dilemmas for parents. Sometimes parents can also struggle to make sense of an uncertain diagnosis, which can further complicate the decision-making process. If you decide to end the pregnancy, certain circumstances may mean you have to wait some time before your baby’s death and/or birth. You may wonder how you will cope with your decision to end the pregnancy, and/or what the physical and emotional impacts could be. You may also worry about how this experience may affect your family or what you might tell others. During any stage of this decision-making process Sands can provide information and nonjudgemental support, irrespective of your decision.

“Sands was there for me in my hour of need. I knew I had to make a decision, but I was in the most gut-wrenching pain and grief. Sands put me in touch with a parent supporter, a woman whose story was very similar to mine. Just having someone there who had walked in the same shoes as me – I can’t explain how much this meant to me, how much it helped me get through this time.” – Kate

*In this booklet we often use the word ‘baby’ although we acknowledge you may have more than one baby as part of a multiple pregnancy. pregnancy Sometimes the words we use might not fit your particular circumstance – we hope you will understand.

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Feelings and reactions after finding out You may have had a routine ultrasound. Perhaps you have had an amniocentesis or chorionic villus sampling (CVS), because of an increased risk of a genetic or chromosomal problem affecting your pregnancy. Regardless of how you found out that your baby has an abnormality or medical condition, it is unlikely that you were prepared for this news. You may be experiencing: Shock – You probably assumed your baby was healthy. Disbelief, denial – You may initially refuse to believe the diagnosis is correct and wish to have the test repeated (in the hope of receiving a different result). Worry, anxiety – About what the diagnosis means for your baby, you as a parent, as well as the rest of your family. You may also be concerned that you may go on to have another baby with the same problem. Confusion – About your baby’s condition and the implications of any decision you might make. Isolation – You may feel that this has never happened to other parents before. Sadness, distress – You may cry a lot and feel overwhelmed. Anguish, guilt, self-blame – You may think that you passed something on to your baby, or that you did something to cause the problem. This is highly unlikely, as most problems found in developing babies are chance occurrences. Maybe you feel guilty because your feelings towards the pregnancy have now changed. Or perhaps you had a previous baby with abnormalities, and now regret your decision to conceive again. Shame – That you did not conceive a healthy baby. Uncertainty – If information or the advice you receive is not clear, or your baby’s diagnosis is not conclusive. Feelings of helplessness or powerlessness – You may feel like you have no control over the situation or what happens to your baby. Feelings of failure or inadequacy – You may feel as though you have let your partner and/or others down. You may also feel that you have failed as a parent. Grief – For the loss of your dreams about the healthy baby you had hoped for, and also for the abnormal baby whose future you now must decide on.

“I was healthy and not expecting any abnormal results. It was such a shock to be told my baby had no chance of survival.” – Betty “I just couldn’t believe the diagnosis was correct. I kept thinking that they would discover the mistake when they did more tests.” – Adam “We felt so anxious waiting for test results – there was this fear of the unknown. Then we felt useless, knowing that nothing that anyone could say will alter the outcome.” – Natasha

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Getting the right information Before you make any decision regarding the future of your pregnancy, try to find out as much as you can about the condition affecting your baby. You will have a lot of information given to you at this time, and it will be hard to remember it all. Many families need several consultations to absorb all the necessary information to make a decision regarding their pregnancy. If you don’t understand any explanations, ask for clarification. Remember that it is normal to have difficulty taking in information when you are experiencing shock or distress. To assist you, collect and read printed information or go to websites recommended by your health professionals. Some couples wish to bring along a trusted friend or family member to these consultations in order to help retain the information given, or to help mind other children. Some families also keep a notebook with them so they can write down questions as they think of them and remember to ask at the next visit. Some questions you may want to ask include: • What are the facts of this condition and how did it occur? • Are there any other conditions (for example, genetic conditions) that we, or the baby, should be tested for? • What will the impact of this diagnosis be on the rest of the pregnancy (for example; further testing, ultrasounds, more frequent visits, etc.)? • Is it necessary to transfer the remainder of pregnancy care to another hospital? • What will this mean in terms of labour and birth? • Will the delivery still take place at the hospital that has already been booked? • Will the baby be delivered at full term or will he or she need to be delivered early? • Is it possible to have a normal birth or is a caesarean section more likely? • What would happen to my baby after birth? • Will my baby need extra treatment or tests after birth? • What does the long-term future hold for my child? Be aware that for some conditions there is a lot of information, but with others there is not. For some babies, the diagnosis and outlook may not be certain. Parents may need a second opinion, or some time may need to pass in the pregnancy before more definite information can be provided. Support from obstetricians and genetic or specialist counsellors will be crucial at this time. You should be given up-to-date, unbiased information that is delivered clearly, compassionately and comprehensively. Sometimes further tests may be necessary to clarify the diagnosis. Parents often consult with a range of specialists who have experience in the management of babies with disability and birth defects. This may include specialist paediatricians, paediatric surgeons, neonatologists and/or a clinical geneticist.

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What are the options? If your baby has a serious diagnosis that is unlikely to be fatal – Your advisors can provide information and options about: • Continuing the pregnancy – This would involve directing you to specialists with experience managing your baby’s condition. In some cases, relevant not-for-profit or parent support organisations may also be suggested. These associations may be able to inform you about the range of resources available for your baby and his/her care as an infant, child and adult. Some families wish to discuss the option of adoption with an adoption caseworker or a social worker with experience in this area.

“The fact that there are loving families who will care for handicapped children gave us the courage to go ahead with the pregnancy, keeping that option open as an out if it became too hard for us to take care of the baby.” – Joe • Ending the pregnancy – This would involve being given information about the different methods available for ending the pregnancy, as well as their associated risks/benefits. The option to end your pregnancy may vary according to the diagnosis, how far advanced the pregnancy is, and legislation in your state or territory. If your baby has a condition that means she/he will die before or soon after birth – Parents will generally have more time to make a decision. Your doctor/obstetrician can provide information and options about: • Continuing the pregnancy: This means allowing your baby to live his or her life, however long or short that may be. Your treating team will probably be able to give you some idea of the chance of your baby dying before delivery or how long he or she might live if born alive. They will be able to give you advice regarding palliative care of your baby after he or she is born, ensuring he or she is comfortable and surrounded by the love of family. For those parents who want more information on palliative care for their baby, the Perinatal Palliative Care website (www.pnpc.org.au) is a valuable resource which also provides links to services available in Australia. The Perinatal Hospice and Palliative Care website (US-based) also has very valuable information (www.perinatalhospice.org).

“We consulted our paediatrician to discuss our thoughts of continuing with the pregnancy. He confirmed what we had been told and read about Lani’s diagnosis ‘being incompatible with life’ and gave us the facts of what would happen should she be born alive. He assisted us to write a post-birth plan that contained our wishes for how much intervention she would receive. Our main concern was that we did not want her to suffer any longer than necessary.” – Rebecca • Ending the pregnancy – This would involve being given information about the different methods available for ending the pregnancy, as well as their associated risks/benefits. The option to end your pregnancy may vary according to the diagnosis, how far advanced the pregnancy is, and legislation in your state or territory. Many parents who have experienced a poor prenatal diagnosis have spoken of the dedication, sensitivity and support provided to them by health professionals. Carers should respond to your questions in a timely and appropriate manner, and be respectful of your cultural and religious values. On rare occasions, parents may experience hospital staff who do not seem to respect their decision, or do not appear empathetic to their difficult circumstance. If you feel that this is the case for you, remember that you have the right to ask for another staff member. If this is too confronting, others may be able to act on your behalf (such as your obstetrician).

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“My obstetrician was so supportive and gave us all the information she knew. I spoke with so many professionals – they all reassured me that this wasn’t my fault. But I kept thinking, ‘Why did this happen to me?’ It was so hard knowing that there were no operations or treatments that could change things.” – Justine “Be prepared for the onslaught of opinions from medical staff, as well as friends and family. Listen and appreciate them but do not be swayed by these influences. Because this decision is final – it must be your own. Also allow yourself time to absorb and acknowledge the life inside you. Your baby may have lost their identity and become a medical ‘term’, but in reality your baby is a life.” – Claire

Making a decision The decision of what to do following a prenatal diagnosis of an abnormality is a very personal one. While you may be offered advice from professionals, family and friends, nobody can make this choice for you. You must be guided by your own values and ethics. Parents often feel overwhelmed, like they cannot make a decision. Give yourself time to absorb the news and fully comprehend a range of possible outcomes for the baby. Also consider how these will affect you, the child and your family in the short and long term. If the diagnosis has been made later in pregnancy (for example, in the second trimester) there may be some sense of urgency to make a decision. It is generally best to still try to take at least a couple of days to consider things. Remember that you are entitled time to make a decision, without feeling rushed. Remember that Sands is here to provide non-judgemental support to parents through this time, and we can put you in touch with other parents who have gone through a similar experience. Below is some general information on how the various options will proceed. Whatever you decide, you will need ongoing support – please refer to the ‘Where to go for more help’ section. • Facing the future caring for a child with an abnormality or medical condition – It may be that you are certain about continuing your pregnancy. You will need ongoing support, so discuss how the remainder of your pregnancy will be managed with your professional carers. Because your baby may need specialised care, the place and timing of delivery may need to be changed. • Facing your baby’s impending death where no active treatment is planned – Some parents choose to continue on with the pregnancy and let the baby die in her/his own time. This precious time may be used to plan your baby’s birth and funeral, as well as creating other memories (such as taking photos of your pregnant belly, writing in a journal, etc.) Families in this situation may find that waiting for labour to start is challenging, as are well-meaning enquiries about the baby and the approaching birth. The uncertainty surrounding the timing of the baby’s death can be very stressful. You may wish to discuss plans for palliative care of your baby, if he or she is born alive, with a paediatrician.

“We had to do a lot of soul searching to decide if we would continue with or terminate the pregnancy. By the time we received the results confirming the initial diagnosis, we were able to tell our obstetrician with certainty that we wanted the pregnancy to continue and allow Lani to choose when it was her time to go. Throughout the rest of the pregnancy we told only close family and friends of Lani’s diagnosis. This allowed us to continue the pregnancy as if it was (relatively) normal, whilst having the support of those close around us. We prepared as much as we could for her arrival, including naming her, buying baby clothes that would fit, organising the memorial service and liaising with support groups. Looking back, those 17 weeks seemed to pass so slowly. That time was sometimes mentally, emotionally and physically challenging, but it remains so precious in our minds.” – Rebecca

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• Ending the pregnancy – Many parents make the decision to end the pregnancy. The two methods involved in ending a pregnancy following the diagnosis of a serious fetal abnormaility are surgical (dilation and curettage (D&C) or a dilation and evacuation (D&E)) or induction of labour. These procedures are often referred to as a ‘termination’ by medical professionals. Depending on the gestation of the pregnancy and the facility you attend, mothers will either be offered one, or a choice between these methods. In some circumstances where the pregnancy has advanced well into the second trimester, and an induction of labour will take place, a procedure called feticide may sometimes be performed. This procedure will end the baby’s life before delivery. For parents, this can be a confronting experience – your health professionals will explain this process to you.

“I just couldn’t get my head around the word ‘termination’, because to me that was an abortion – and I wanted this baby. I struggled to come to terms with the fact that I was ending Billy’s life, even though I knew he wasn’t going to survive.” – Ali “I could feel my son kick and move within me and I knew that if he had been healthy, he would have been a busy boy, always on the go. We loved him and wanted him so much. However, he would never be able to walk or talk. It wasn’t right to condemn him to a life of pain and suffering that he would never have the capacity to understand. It broke our hearts to let him go, but we took the pain so he would never have to suffer.” – Natasha “Although the decision to induce/abort is obviously not one anyone would want to face, when the decision is made, sometimes there is a release – kind of a relief that something will happen and you can move on to the next step.” – Claire

What do I need to know about ending the pregnancy? Legal rights and requirements States vary in their legislation surrounding termination of pregnancy, including the upper limit of gestation at which ending the pregnancy may be available. This may impact on the time you have in which to make a decision. You may also want to take the below information into consideration, as it may influence the way you choose to manage your baby’s birth and death. Registration: Birth registration creates an official public record for your baby’s identity. Without a birth registration, a birth certificate cannot be produced. In Australia, legislation surrounding the registration of babies terminated for medical reasons is not currently uniform, so ask your obstetrician about your own situation. If you decide to end the pregnancy, make sure you understand that the timeframe you choose could impact on whether or not your baby can be registered.

“I would have liked to have a birth and death certificate to acknowledge my daughter’s existence and to have had a funeral. I think the doctor thought he was doing us a favour by recording 19 weeks instead of twenty weeks, so we wouldn’t have to go through the trauma of a funeral.” – Jonah Burial and cremation: The law requires that all registered babies be buried or cremated. The costs of the funeral and burial/cremation may be offset by federal government payments – you can contact Centrelink to check your eligibility. If your baby was not registered, it is not a legal requirement to have your baby buried or cremated. However, this does not prevent parents from making their own arrangements. Many hospitals offer a memorial service and cremation options. Alternatively, you may be able to bury your baby in a cemetery through a funeral director (some cemeteries accommodate the burial of non-registered babies) or you may be able to bury your baby at home. Your carers should have more information on your available options, but if you still have questions, contact your state health department.

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Methods of ending the pregnanc pregnancy Ending the pregnancy surgically You may be given the option to have a surgical procedure – either called a dilation and curettage (D&C) or a dilation and evacuation (D&E). This terminology mainly relates to the gestation at which the pregnancy is ended. Ending the pregnancy surgically usually means there is not an option to see or hold your baby.

Ending the pregnancy by induction Induction (using medicine to bring on labour) may be recommended, particularly later in pregnancy. Some parents also choose this option because it allows them to deliver a baby they may be able to see and hold. This option may also make it possible for professionals to perform a more complete examination of the baby after delivery.

“When we arrived at hospital, we were greeted by this beautiful nurse, and she just flung her arms around me and hugged me. She explained what was going to happen so I knew what to expect. The care we received was wonderful, the process was explained clearly, and I was made to feel as physically comfortable as possible, with blankets, food – anything I needed.” – Ali “I felt very disconnected from my midwife, I felt that she didn’t have the capacity to reassure me. I’m not very spiritual, but the person who really helped me was the hospital pastor – he didn’t try in vain to ‘fix’ me, he just offered comfort.” – Kate

Ending the pregnancy - other factors to consider Autopsy If you are considering having an autopsy, or post-mortem examination, performed on your baby, be aware that an induction of labour is generally preferable to a surgical procedure (D&C or D&E). You may choose to have a full autopsy, which involves a careful external and internal examination of your baby by an experienced pathologist. The pathologist will handle your baby with the utmost care and respect. It is usually still possible to have a full autopsy even if you have special cultural or religious requirements regarding the timing of your baby’s burial soon after death. A full autopsy gives the most amount of information to families in terms of confirming the diagnosis and providing accurate information that will be helpful when considering a subsequent pregnancy. An autopsy is particularly crucial when a diagnosis has not been confirmed. It is less likely to provide new or important information when your baby has a very clear diagnosis, such as Trisomy 21 (Down syndrome). Even if you do not wish a full autopsy to be performed, a limited autopsy may still provide useful information. This might include a careful external examination of your baby, together with the taking of photographs or X-rays after your baby is born, genetic samples from the baby’s cord and examination of the placenta. The issue of autopsy is a sensitive one, which can be difficult for couples to think about. However, considering whether or not to have an autopsy is an important step in this process. Sadly, for some parents, the role of an autopsy has not been properly understood. As a result, they have opted not to have one and their baby’s diagnosis is never confirmed, or information that might have helped when considering the next pregnancy is not complete. Later, when these parents enquire about the problem recurring in another pregnancy, they may be upset to learn that there are very few answers that medical professionals can offer them.

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Where will the surgical procedure take place? For some women, the termination can be performed in the hospital where they originally opted to have their baby. However, if a surgical procedure is not possible in your local hospital, you will have to transfer. Some families have to move from a rural hospital to a city hospital, while others may have to travel interstate. This will also mean that you have to arrange transport for your baby’s remains, as well as yourself and perhaps other family members. Being transferred to another hospital, city or state will add to the stress and anxiety you will be feeling, as you may not have your family and friends there to support you. Be aware that you may be referred to a private abortion centre. Discuss with your doctor where the procedure is to be performed and make sure you are aware of what (if any) facilities there are for seeing and holding your baby, having an autopsy performed, as well as accessing options for burial/cremation and support services. Not all clinics have the same services available and it is best to understand what is on offer before starting treatment.

Seeing and holding your baby The prospect of seeing and holding your baby who has died, or is dying, is distressing for most parents. Nevertheless, many bereaved parents who were able to see and hold their baby say that the time they spent with their baby was a helpful experience and a treasured memory. If you would like to see and hold your baby, ask the hospital staff if it is possible for you to do so. When a pregnancy ends in termination, whether you can see or hold your baby will depend partly on the gestation and how the pregnancy was ended. It is natural for parents to feel concerned about what their baby will look like. Many people have never seen a dead person before, and fewer still have seen a dead baby. The hospital staff can let you know what to expect and will usually wrap your baby so you can explore how she/ he looks at your own pace. Many conditions won’t be visibly apparent. Even when defects are obvious, most parents say that their focus was instinctively directed towards the perfection of their baby’s other physical features. Depending on the gestation at which you deliver, you may wish to bring clothes to dress your baby or alternatively a special shawl or blanket to wrap your baby in.

“I was unsure of what my baby would look like. I asked the nurse to wait until my best friend could arrive, so that I could have someone to support me the first time I saw her. Holding her was so surreal – I am glad I spent some time with her.” – Betty “Billy’s abnormalities were quite visible. I was grateful for that though, because it meant that they hadn’t made a mistake on the ultrasounds and that we had made the right call. He was long enough to fit in the palm of my hands. He had extra fingers and toes and quite a severely cleft palate. I am so glad we saw him, now I will always have that memory. He didn’t look anywhere near as disfigured or scary as we had imaged. If I hadn’t seen him I would have always wondered what he looked like.” – Ali “Lani was far more beautiful than we imagined, with everything in miniature. From her small doll-like face to her body, which was all arms and legs. We spent the next 20 or so minutes just holding her, looking at her and talking to her, before she passed peacefully away in her Daddy’s arms.” – Rebecca

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Taking photographs aphs of your baby If you are able to see and/or hold your baby, you may wish to photograph this experience. The photos that you take now may be the only tangible, real-life images you will have of your baby for the rest of your lives. Even if you do not wish to see or hold your baby, Sands recommends having photos taken of him or her anyway. You might not be able to face these photos right away, but the hospital can keep them on file in case you want to see them at a later date. Some parents feel uncomfortable about having their baby photographed, especially if their baby has visible defects or part of their body is damaged. Many, however, have found comfort in taking close-up shots of the parts of their baby’s body that they particularly wanted to remember. Many parents also contact Heartfelt, a volunteer organisation of photographers who take photos of stillborn, very ill and premature babies, free of charge. They will come to hospital to capture precious memories of your baby, and most of the photographers have suffered the death of a baby themselves, so will be sensitive to your situation. Many parents who have ended their pregnancy due to an abnormality with their baby have contacted Heartfelt. Call 1800 583 768.

“I have photos from Heartfelt and they have helped me to cope. People comment on them and say how beautiful Harry looked. This means so much to me.” – Justine If you don’t feel comfortable having a photographer take pictures, you can take them yourself or have a close relative or hospital staff member help you. Most hospitals have a camera in the maternity or birthing ward and staff will usually offer to take photos of you with your baby. If you are taking your own photos, try to get shots of you holding your baby’s hands and feet, as well as cuddling them with your partner and perhaps other family members. You might like to have them snuggled up to a teddy or quilt. Don’t feel like you can only take a few photos – most parents say they wish they had taken more. Also remember to collect anything from the hospital that reminds you of your baby. You can ask staff for medical documentation, hospital bracelets, locks of hair, hand and footprints, clothing, bedding, sympathy cards or letters as well as flowers from bouquets. Later on, you will be thankful that you have these memories.

Preparing to leave the hospital Before you leave the hospital, speak to the hospital staff caring for you, so that you know what to expect during your physical recovery. Natural methods or medication are available to suppress lactation, while painkillers can help with crampy abdominal pain – these are both common complaints when a pregnancy ends. Some mothers whose pregnancy was ended surgically experience bleeding, and first-time mothers are sometimes unprepared for this. Be sure to have phone numbers of doctors, nurses and the hospital handy should you need to call someone once you have left the hospital. Staff will make any necessary follow-up arrangements for post-hospital nursing assistance, but contact them earlier if you have any questions or issues to discuss. For most mothers, while the physical effects they experience after leaving the hospital were often painful, almost all said that the emotional turmoil was the most painful suffering they had to endure. We will go on to discuss this in further detail in the section, ‘Feelings – after your baby has died’.

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Leaving the hospital Coming home from the hospital without your baby is devastating for most parents. Mothers in particular, often describe this as the hardest part of their experience. They say that having to separate themselves from their baby, and walk away from the hospital, was extremely difficult. Many say these physical actions went against a strong motherly instinct to be with their child and protect them.

“All I wanted was to take her with me – I was desperate. My partner kept telling me it was time to leave, but I just couldn’t, because I knew that once I did, that was it. ‘Just 5 more minutes,’ I would say. I think I said that about 20 times, until I finally let Steven usher me out. I remember the drive home, I was battling with every fibre of my being. I just wanted to cuddle and care for her – dead or alive, I didn’t care. I told Steven to turn back, but he reasoned with me, and in the end, we made it home.” – Lisa “I felt like I was leaving part of me behind. The thought of her alone, refrigerated – I can’t explain the way it made me feel. Walking away – my legs were like lead. It felt so wrong, so unnatural.” – Emma Despite this intense urge to stay close to their baby, many parents wanted to be home, where they could grieve and see their other family members.

Creating memories Having tangible memories of a baby is helpful for bereaved parents, as they provide something on which to focus their sadness and grief. For many parents, this is something they begin while still in hospital, while others wait some time after arriving home. Some ways to create lasting reminders of the brief time you spent with your baby include: Writing a birth announcement – Not only is this a way to inform others about your baby’s birth and death, it is something you can keep with your baby’s name on it. You may initially feel uncomfortable writing this, because this message is traditionally used to deliver joyful news. However, many parents have found it helpful, as it validates the baby’s life. Here are some examples of what other parents have written: LOVEDAY, Emily. 11/04/2013 – 12/04/2013. To Sarah and Michael, a daughter, to Harriet, a little sister. For the four hours she lived, precious Emily was given a lifetime of love and hugs. We know she will be keeping watch over us, as we hold her forever in our hearts. COMBES, Jye Caleb. Stillborn on 25/02/2013 in Mater Hospital. It is with a heavy and grieving heart that we announce the passing of Caleb, our treasured baby boy. Caleb, you were not meant for this world – but to us, you were perfect in every little way. We will love you always. Mummy, Daddy and Alexander. Art or craft – Some parents choose or commission a sculpture or painting that symbolises their baby. Creative activities such as art or craft can also be a constructive way to express your feelings. Sunset photos – Australian-based project Christian’s Beach provides photographs of babies’ names written in the shore at sunset. Visit www.namesinthesand.blogspot.com.au. Jewellery – Customised jewellery can be a deeply treasured keepsake. Many online companies specialise in personalised memorial jewellery for pregnancy loss or babies who have died. You may like to get a locket and keep a lock of your baby’s hair inside or have their name and birthdate engraved.

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Portraits – Pencil, pastel or charcoal drawings can be recreated from photos.

“I have a pastel picture of my first two babies, Billy and Phoebe. Billy was born at 19 weeks gestation after an induction of labour due to genetic abnormalities, and Phoebe miscarried at 11 weeks. I asked the artist to be true to the photo I sent of Billy, as I didn’t want his deformities to be disguised or hidden. I’m so grateful to have a beautiful depiction of my two precious souls sleeping. It’s brought me bittersweet joy as I’ve pondered what might have been.” – Ali Fabric mementos – A quilt or cushion with an embroidered name or motif can be something to cuddle for comfort. Memory boxes – Can be filled with anything that reminds you of your baby – ultrasound photos, medical records, hospital bracelets, clothing, dried flowers from bouquets, sympathy cards or letters. Framed certificates – If your baby does not have a birth certificate, Sands has special ‘In Memory’ certificates available for all babies who have died. Mementos featuring hand and footprints – Imprints or 3D casts can often be set into ornaments or framed. Photo albums, scrapbooks or journals – You may like to make your own scrapbook or create a photo album online. Poems, stories, diary entries or letters to your baby can be therapeutic ways in which to help you understand and relate your thoughts. Customised toys or ornaments – Some examples include a handmade candle with your baby’s name on it, or a cloth doll made to your baby’s weight and dimensions. Online or printed tributes – Such as a webpage, blog, video or message on the Sands virtual memorial (see the back of this booklet for our state organisation web addresses). You could also send your baby’s name into Sands, to be featured in the memorial roll of our book ‘Your baby has died’. Name a star after your baby – This can be done through the International Star Registry at www. starregistry.com.au. Tattoos – Popular designs include foot or handprints, symbols of motherhood, hearts and flowers. Keepsakes containing ashes – Such as a teddy bear or jewellery. Memorial trees, flowers or gardens – These can serve as a living symbol of your baby and your love for him or her. Sands also has a free booklet ‘Creating memories’, with photos of how other parents have created memories. This can be mailed to you or downloaded at www.sands.org.au.

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Planning a funeral Sands encourage parents to have a funeral or a memorial service for their baby, as they would for other family members who have died. This is an opportunity for you to acknowledge your baby’s existence and accept their death. There is no rush to do this – most parents begin preparations after arriving home from the hospital. You may choose to have a funeral director, celebrant, spiritual or religious representative to help arrange a service that reflects your own faith and beliefs. A service can be as individual as you wish – it can be held in a place of your choice, with special tributes made for your baby. This could include yourself or others reading, playing music or sharing stories. Even if your baby was very tiny, he/she still represented your hopes and dreams for the future – and you may wish to mark his or her existence with some kind of ritual. For more information and ideas on planning a funeral, Sands has an in-depth book, ‘Your baby has died’, which is free to bereaved parents. See the back of this booklet for more details.

Feelings – after your baby has died The death of a baby is a tragic experience that is unique for every bereaved parent. No one can be prepared for the emotional turmoil that follows. Families’ dreams for a future with their child are lost and their heartbreak is immeasurable. For parents who decide to end the pregnancy – some initially feel a sense of relief that the experience is over. Often though, the grief of these bereaved parents can become compounded by the knowledge that they chose to end their baby’s life. Parents in this situation often say that they underestimated just how much this would affect them. Some parents feel selfish for this decision; their love and concern for the baby conflicting with the needs of the rest of the family. Sometimes one parent carries more guilt; sometimes others feel blamed for the decision. Support from family and friends at this time can make a big difference.

“I felt guilty – like I was being blamed for the decision.” – Rob “I felt angry at myself, like I hadn’t protected my baby – because I had chosen to terminate him. I felt like I hadn’t done the right thing by him – but now I know that I have, because I didn’t want to see him suffering.” – Justine “I’m usually pretty strong, but those first few days and weeks were agonising. I couldn’t stop thinking, ‘Why did this happen to us? So many parents out there don’t plan or care for their babies, and we tried so hard and had so much love to give, and yet we came home empty handed.’” – Stephanie

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Your grief It is important to remember that grief is a normal healing process. There is no set timeline for grief – it will not go away overnight and is not an illness to ‘get over’. We as a society expect grief to be finished at some stage – but grief never ends, it just becomes easier to manage with time. The relationship parents develop with their growing baby is individual, and the sense of loss they feel at their death is not dependent on the duration of a pregnancy. Individual circumstances such as previous losses, infertility and increasing maternal age can impact on the emotional response to the baby’s death and the time it will take to grieve. Many bereaved parents feel isolated and lonely, because they no longer feel that their feelings are acceptable in public. People do not often understand or acknowledge the close bond that can form between parents and their expected baby. Couples should be aware that women and men often grieve differently. Women often have an intense need to express their feelings by crying and talking about what has happened. Men may be less likely to express themselves so openly. Instead, they often channel their emotions into physical activities such as gardening, exercising or building things. Conflicts can arise when the woman feels as though her partner isn’t as affected by the experience. Potential relationship problems can be minimised if couples accept their differences. It is important for partners to offer support by showing understanding, patience and communicating as openly as possible. People who are grieving find their feelings of loss and sadness come and go. Holidays, birthdays, anniversaries and the baby’s due date are commonly more difficult days, as parents remember their baby and think of the ‘what ifs’ and ‘should bes’. Other stressful life events, such as the death of a loved one, work or financial pressure can also bring up grief emotions. Do not expect too much of yourself. You have a right to recover in your own way – for some parents this will happen quickly, while others may take a long time. The Sands collection of resources has much more information on coping with grief – please see the back of this booklet for more information.

“I was entirely unprepared for how much this would rock me to the core. I remember coming out of the procedure, thinking the worst was over. I was so incredibly naïve. It was only after about a year that I began to feel like I was getting some balance back in my life.” – Carmen “I didn’t know how to support my wife. In the hospital she was so quiet and sad, but later at home, she was so upset and angry that she started throwing furniture around the room. I didn’t know what to do. At that point I called Sands and was put in contact with a parent supporter. I spoke with the woman for about 30 minutes – I told her about what had happened with Daniel, and also about the grief we were experiencing. After the conversation, I felt like I had some strategies to help support my wife.” – David

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Reactions of others It is important to tell your trusted family and friends about this experience, as they will form vital support networks. Loved ones may sometimes make comments that minimise your loss – such as ‘it was for the best’. Although not very helpful, remember that these are usually intended with kindness. Many parents who choose to end a pregnancy due to a diagnosis of abnormality are unsure of what and how much to tell people. This issue is still largely a taboo subject and some people hold very strong religious or ethical views about it. While parents want to be honest with those around them, they may be fearful of others’ reactions. Sometimes, if you do tell others that you have chosen to end your pregnancy, you may encounter people who cannot understand or accept your decision. These people may already hold strong views in this area, or perhaps they are not aware of the complexity of your medical situation, or the depth of your emotional turmoil. Sometimes, even those who are close to you may not be able to support you in the way you had hoped. They may be too traumatised themselves, or their judgements may be too hurtful for you to deal with.

“Our close family knew that we ended the pregnancy, and they were extremely supportive. But I made the decision to tell my colleagues and acquaintances our son was stillborn – because I just didn’t know how people would react.” – Emma “For me personally, trying to hide the reality that I terminated my pregnancy felt like I was burying my head in the sand. A few people said that I was ‘murdering’ my baby. I’ve heard so many horrible things, but I have to tell the truth. It makes me feel like I can cope.” – Justine “When people made comments that hurt, I learned not to hold this against them. Don’t expect others to fully understand and say the right things.” – Claire

What to tell children If you have children who knew about the pregnancy, they may be aware of your sadness or distress. Many parents choose to tell their other children about the problem with their sibling. Try to provide a simple and honest explanation of what is happening. Some people say that the baby ‘is not growing properly’. Try to involve children as much as possible. Prepare them for the birth of their sibling – and help them to understand if he/she will die or spend time in hospital. Children do not respond well to being excluded from important family matters. When they sense that something is wrong, but do not know the cause, they often believe they are responsible or that something bad might happen to them also. They may need comfort, reassurance and time to deal with their emotions. Behavioural changes are common during this time. Sands has a free booklet ‘Caring for your other children’, which goes into this topic in more detail.

“On the day of Tammy’s procedure, I picked Alicia up from school. It was only then that I realised how the death of our baby would affect her too. She had lots of questions, and I found it really hard to know how to answer, without upsetting or scaring her.” – Ray

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The future Parents who have gone through the trauma of their baby’s death due to an abnormality or condition often fear the problem will recur in a subsequent pregnancy. If you have had an autopsy done, a clinical geneticist can give results and discuss the possibility that future pregnancies will be affected. Although some couples have a repeated experience, for most parents, future pregnancies with healthy babies are usually possible. Ending a pregnancy due to fetal abnormality can have a devastating impact on families. Parents often say that it is the most significant and difficult decision they have ever had to face in their life. It challenges assumptions and beliefs, and many parents have said they came out of the experience as a ‘changed person’. Sadness and grief are normal reactions, but with good support parents do get through this experience.

“Thinking about having another baby was very scary. As well as deciding whether to try again, there were other choices to be made, like, ‘Do we want to go for that scan/have that prenatal test?’” – Dave “I only have a few regrets: not having a support person, and I would have liked more photos. Since my daughter’s birth, I have realised that what I was given was a diagnosis, not a prognosis. I don’t know if that would have changed my decision in any way, but I wish that I did my own research before making a decision.” – Betty “I never know when the tears are going to come. But the acute pain – where the knife that cuts your heart so sharply – it is gone now.” – Ali “Harry is part of our family – he just isn’t with us at this time. I am taking each day as it comes.” – Justine “We feel so blessed to have been able to meet Lani and spend such precious time getting to know her. We call it our happy ending to a sad story. We miss our little Lani Mae like crazy and wish things could have been different for our second daughter. She has made such an enormous impact on our lives that we will never be the same.” – Grant

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Where to go for more help Remember that you are not alone in this experience. In the hospital, you can speak with a pastoral care worker, social worker or the hospital bereavement service. Families can also see a genetic counselling service, available in all major public hospitals in every state. Two other services that can be accessed Australia-wide include: Association of Genetic Support of Australasia (AGSA) – Provides peer support and information for those affected directly or indirectly by genetic conditions/rare diseases throughout Australasia. p: (02) 9211 1462 e: info@agsa-geneticsupport.org.au w: www.agsa-geneticsupport.org.au The Centre for Genetics Education NSW Health – Provides fact sheets on human genetics, inheritance, genetic testing and genetic conditions. The Centre is a NSW service, but provides a national contact list of genetic services and support groups. p: (02) 9462 9599 e: contact@genetics.edu.au w: www.genetics.edu.au Ongoing care is very significant in the positive resolution of grief. Your partner, family and friends can be good sources of support. Many women find that talking with other women who have received a diagnosis of an abnormality reassures them and reduces feelings of isolation. If you want to speak to a Sands parent supporter who has had a similar experience, call our support line on 1300 0 sands (1300 072 637) or email support@sands.org.au. You can also talk to a counsellor, minister of your own faith (if you have one) or another health professional, such as a psychologist. Sands also has support meetings and a selection of booklets that may also be helpful to you, see the back of this booklet for more details.

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Making a difficult decision: a summary summar • Learning about a serious medical condition or abnormality with an unborn baby almost always comes as a shock to parents. Most are unprepared for the emotional and ethical conflicts that will follow, no matter which subsequent course of action they choose. • The decision-making process can be a very confusing time, filled with different opinions and complex information that is not always clear-cut. Give yourself time to understand the diagnosis and outlook for your baby, and to carefully consider your options. • All options and decisions are valid and parents need to make the right decision for them, free from undue external influence. Parents should have access to non-judgemental, comprehensive and accurate information provided in a compassionate environment. • Parents dealing with this difficult situation often experience feelings of shame, isolation, and frequently fear that others may judge them for their decisions. • When parents chose to end a much-wanted pregnancy, or a baby dies shortly after birth, the impact on parents is often devastating. Support from family, friends and professionals is vital.

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Glossary Amniocentesis – A procedure that allows a small amount of fluid around the developing baby (amniotic fluid) to be collected. The fluid contains cells from the baby that can be tested for some types of birth defects. The most common type of test done on an amniocentesis sample is a chromosome test. Autopsy (also known as a post-mortem) – An examination that aims to find out additional information about a baby’s condition or abnormality. Autopsies are carried out by pathologists; doctors who specialise in understanding the nature and causes of disease. Autopsies can be either full or limited. A full autopsy involves a careful external and internal examination. Incisions are made to examine the baby’s internal organs. A limited autopsy might include an external examination and other non-invasive investigations. Chorionic villus sampling (CVS) – A procedure that allows a small sample of the baby’s developing placenta (after-birth) to be collected. The most common type of test done on a CVS sample is a chromosome test. In some cases, tests for specific genetic conditions may be done. Dilatation and curettage (D&C) – An operation to lightly scrape away the lining of the uterus, using a spoon-shaped instrument called a curette. Dilation and evacuation (D&E) – A surgical procedure in which the cervix is dilated and the early products of conception are removed from the uterus. Feticide – A procedure that results in the death of a fetus, commonly by administering an injection to stop the baby’s heart beating, while it is still in the uterus. Fetus – A term used by health professionals to describe the product of conception, usually after the eighth week of pregnancy to the moment of birth. The term embryo may be used prior to eight weeks gestation. Genes – The basic unit of heredity; a segment of DNA that contains the information for a specific characteristic or function. Genetic counselling – Diagnosis, information and support provided by health professionals who have specialised training in genetics and counselling. Gestation – Stage of pregnancy development. Placenta – The vascular structure in the uterus that provides oxygen and nutrients for a developing fetus. Prenatal diagnosis – Information about the health and condition of an unborn fetus. Termination of pregnancy (TOP) – An intervention to ensure that a pregnancy does not continue; the ending of a pregnancy. Trimester – A three-month period used to describe stages of pregnancy. Ultrasound – Scans that use high frequency sound waves to provide a picture of a developing baby. Ultrasounds can be done at any stage in the pregnancy.

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References Support After Fetal Diagnosis of Abnormality (SAFDA), Diagnosis of abnormality in an unborn baby – The Impact, Options and Afterwards, August 2006 http://www.genetics.edu.au/Information/PublicationsBrochuresandPamphlets/Diagnosis%20 of%20Abnormality%20in%20an%20Unborn%20Baby National Health and Medical Research Council, Genetics in Family Medicine – The Australian Handbook for General Practitioners, Testing and pregnancy, 2007 http://www.nhmrc.gov.au/_files_nhmrc/file/your_health/egenetics/genetics_in_family_mdicine.pdf National Association for Loss & Grief (NSW), Termination of Pregnancy – Grief reactions associated with termination of pregnancy for medical reasons, April 2012 http://www.nalag.org.au/Brochures/Termination%20Pregnancy%20-%20Medical%20(State).pdf Healthtalkonline.org, ‘Ending a pregnancy for fetal abnormality’, January 2006 (last updated May 2012) http://www.healthtalkonline.org/Pregnancy_children/Ending_a_pregnancy_for_fetal_ abnormality


About Sands Sands is a national not-for-profit organisation that offers support when a baby dies before, during or soon after birth. Sands can put people in contact with a volunteer parent supporter who has also suffered the death of their baby. Each parent supporter is specially trained to provide caring, non-judgemental and ongoing support to anyone affected by the death of a baby. Sands also offers monthly meetings, member newsletters, annual memorial services and resource libraries. Our collection of booklets, listed below, can be mailed direct to individuals or downloaded from www.sands.org.au. • About Sands (brochure) • Your baby has died (in-depth book) • Early pregnancy loss • Creating memories • A father’s grief • For family and friends • For grandparents • Caring for your other children • Planning another pregnancy • If your baby died many years ago • Easy English/multilingual • Making a difficult decision (for parents who have received a diagnosis of an abnormality in their unborn baby) • Caring for bereaved parents (for health professionals)

National bereavement support Telephone support – 1300 0 sands (1300 072 637) Volunteer parent supporters are on call 24/7. Email support − support@sands.org.au Contact a local Sands office Sands Victoria 201/901 Whitehorse Road Box Hill Victoria 3128 t (03) 9899 0217 f (03) 9899 0219 e info@sandsvic.org.au w www.sandsvic.org.au Sands Queensland 505 Bowen Terrace PO Box 934 New Farm Queensland 4005 t (07) 3254 3422 f (07) 3358 2533 e admin@sandsqld.com e support@sandsqld.com w www.sandsqld.com

Sands South Australia PO Box 380 Park Holme South Australia 5043 t (08) 8277 0304 e info@sandssa.org w www.sandssa.org Sands Tasmania t 0415 127 464 e info@sandstas.sands.org.au w www.sandstas.org.au Sands Australia (National Council) 201/901 Whitehorse Road Box Hill Victoria 3128 t (03) 9899 9414 e info@sands.org.au w www.sands.org.au

This brochure was funded by the Australian Government Department of Health and Ageing and Freemasons Public Charitable Foundation. © Sands Australia National Council Inc. 2013. ABN 47 437 480 296


Making a difficult decision