All posts by : mack

Grief is a natural life process and yet so very very painful. Losing a baby is every parent’s worse nightmare.

This section wil outline some of the grief stages and some suggestions to cope with grief.

• Grief stages
• Coping with Grief
• Poems

Organising the funeral

Organising your baby’s funeral has understandably been described by some parents as an immensely difficult task; the related practicalities to be planned are unlikely to be processed mentally at all, especially when you are feeling distressed and overwhelmed and have just given birth. Some parents choose to organise it before the baby’s birth; some choose to leave it until after the baby has died. As always, there is no right or wrong answer, and parents should do what feels right.

There are advantages and disadvantages to each option. Organising the funeral beforehand could be traumatic, but parents would be more likely to think ‘straight’ and plan things the way they would want them to be. Others may feel that leaving the planning for after the death is a little more ‘logical’ and hopeful, but being distraught by the birth and the death of their child, parents may miss out on thinking about valuable things they might have needed.

• Funeral director:

Would you prefer a man or a woman to conduct the funeral or do you have no preference? Would you prefer someone who has lost a child or is already familiar with children’s funerals? Is the person approachable and can he be contacted for questions? The key is to feel comfortable with the person and being able to ‘trust’ him with your child when the time comes. Some parents may not relate to a funeral director but may be too embarrassed or overwhelmed to do anything about it. It is vital for parents to know they have the right to meet a funeral director and decide if the person is ‘right’ for their family.

• Burial or cremation:

Another personal choice; do you feel comfortable with one idea or another? Would you prefer your child’s body to be laid to rest in the ground or would you prefer to have the ashes at home or scattered somewhere meaningful?

• Celebrant:

Being at ease with a celebrant is just as important as it is with the funeral director. The person could be a bishop or priest from your church group, a celebrant you know or have been recommended, or someone the funeral director has contacted on your behalf. Once again, the key is to talk to any celebrant before the service to ensure that you agree on what will be done and said.

• The service:

I believe the service to be a ‘farewell party’ for your child. As emotional as it will get, I feel it is vital to do all the things you want, as it will be the last thing you will do for your child. Parents should feel they ‘own’ the ceremony and be able to express their needs and have them met. Families should take the time to sit down and discuss what really matters for them in terms of rituals, and what can be left up to the celebrant or funeral director. Things you can choose are music, flowers, toys to display, decorations, photos or portrait displayed, songs to be sung, photos to be taken or videotapes to be organised, talks or poems to be read, having an open or closed casket and who should be involved in the preparations. Not everyone will have the same needs, and it is imperative to do what feels right for you.

• The cemetery:

There are many cemeteries and it can be overwhelming to decide which should be the ‘one’. If possible, try to visit a few so you have an idea of how they feel to you, and have a look at the general appearance. Is it well maintained? Are you allowed to leave little things on your baby’s grave? Are there opening and closing hours, is there an office or a florist on site?

• The burial site:

Many parents have little experience in organising a funeral, let alone a child’s funeral, and find out much too late about facts that could have been valuable. Do you want your baby to be buried in a children’s section? Would you prefer a family site, where you can all be buried later? Do you want your baby to have a plaque on the grave or would you prefer to choose a site where you can build a garden? What costs are involved? How close apart will all the gravesites be? Is the grass mown and watered? Here are some of the considerations you might want to think about when choosing a burial site for your baby.

• Options:

The ‘extras’ are often the hardest thing to organise as they have an intimate dimension for the parents. There is often a cost involved with these things. The casket is not an option as such but its size or shape is, if you want enough room to place toys or other items in it. You should also be able to have special stickers or decorations placed on the casket if you wish. Press notices can be a tangible reminder to keep and this can be organised by the Funeral Director. You would need to choose a notice and a paper for the message to go in. Balloons, doves or butterflies to be released are a lovely and uplifting way to conclude your child’s service. A portrait or sketch by a professional artist is also a wonderful reminder; many can be done while your child is at the funeral home, although they can be done from a photo at any time. A memorial or signature book for your guests to sign and write messages is also an easy way to remember who came and record special notes and events of the day. Calligraphy may be included or may not. Funeral directors often do hand and footprint moulds; however, this is a personal decision on the director’s part, so you should either check or request this. The moulds are relatively inexpensive and will give you a physical impression of what your baby’s feet and hands were like when the photos no longer will. Finally, you should be able to organise flowers to have on the day in advance. Bear in mind that you may not feel like going to the florist on the morning of the funeral.

Many parents keep souvenirs of their children growing up, and most children love looking at these, whether they are of themselves or their siblings.

Memories last a lifetime and they will be a source of joy for your other children.

Keeping tangible reminders of your beloved baby will help you to keep a small part of them with you and other family members.

In this chapter, ways to reinforce memories of your special-needs baby will be explained; some will be easy, others will need planning. Everyone is really encouraged to try to create as many reminders as possible. This applies to babies born after termination too. Your baby is precious whether you decided to terminate or to continue your pregnancy. In the event that your child was induced, you may still ask your midwife to take photos and may be able to see or hold your baby.

• Pictures: Take lots – it’s better have too many than too few. Asking someone else to be ‘in charge’ of the photos is a great idea. Then you will not miss out on precious time. I would advise taking photos of the pregnancy, the birth, the child in special nursery and the funeral, as well as anything you feel is relevant or could bring you peace one day.

• • Home video: Having a tape of your baby is wonderful. It is different from photos and will bring you as much joy but in a different way. Once again, asking someone else to be in charge may be a good idea.

• Keep pregnancy reminders: From the hospital details, appointment cards, pregnancy test, ultrasound pictures, tummy pictures, train or parking tickets to the hospital samples.

• Keep birth reminders: Birth and/ or death certificates, clothes the baby wore, a lock of hair, umbilical cord clamp, nail clippings, blanket, items bought for the baby, headlines or television programme of the day, as well as details about the birth.

• Keep funeral reminders: Funeral plan, invoices, legal documents, the funeral ceremony programme, pictures drawn by your other children or nieces and nephews for your baby, all cards received, pressed flowers, a duplicate name–plate (casket), a copy of the music for the service, a list of what you placed in the casket, a list of the people who attended.

• Hand and foot prints: Many professionals do prints on babies including babies who have died. Some funeral directors do plaster hand- and footprints for a small fee or you can buy your own kit from some shops. Great places to start include Target, K-mart (Australia), Wal-Mart and target (USA), and Marks and Spencer or Abound (UK).

• A professional hand-drawn portrait: It will be such a happy memory to display in your home; it can be done either face-to-face or from a photo.

• A picture of the sunrise and/or sunset on your child’s special day: an original photo taken on the day your child was born, died or had a birthday will always represent that special moment. Contact a freelance photographer in your area or look in the yellow pages for a name and number.

• A diary: and/or a spiritual album with poems, quotes, special photos and so on.

• A meaningful piece of jewellery:It may be very helpful to have a piece of jewellery that you can halve or separate, such as a set of earrings or a pendant, with one piece being kept by the mother and the other by the child.

• A custom hand made Christening or burial gown for your baby such as Dana’s unique gowns.

It would be foolish to say that relaxation techniques are enough to make you forget what you are going through. However, most parents felt that their pregnancy could be enjoyed to some extent, and should be, to celebrate the life inside them.

A mother who has decided to proceed with the pregnancy should strive to live her pregnancy to the fullest. It will be a source of joy and memories in the long term.

The following examples range from everyday tips to actual techniques. Not all of these techniques will be suitable for every woman and they are only offered as possible examples.

• Going for a walk

• Exercise will help to clear your mind and ease bodily tension.

• Phoning or visiting a friend

• Networking and sharing our problems with a friend decrease stress levels.

• Delegating household tasks

• Remember that everyone can help with the household chores, including young children who learn to tidy up or set the table.

• Taking a personal daily break

• Allowing yourself to take at least half an hour per day, for yourself exclusively, will help you relax

• Having a laugh

• A good laugh with a friend, whether while watching a comedy, reading a funny

• magazine or telling jokes will also help you to unwind.

• Getting a massage, a facial, or having your hair or nails done

• You may feel like a totally new person and regain energy.

• Finding a new hobby or activity

• You may like to consider taking up an instrument, an artistic activity or anything you

• find uplifting.

• Reading or writing inspiring literature / poems / journals

• These may uplift you, give you energy, and to some extent allow you to feel your inner emotions.

• Visiting a peaceful place: Some may like the beach and others might prefer the countryside. Regardless of your preferences, staying in a peaceful spot may bring you stillness as well.

• Transforming your surroundings

• Make sure your house and general surroundings are positively charged to boost you rather than bring you down. This may include the lighting in the house, the tidiness, music, scents and the general appearance.

• Meditating: Meditation is the art of focusing your attention while breathing deeply and perhaps focusing on one image. It brings you calmness by keeping your mind on positive thoughts.

• Aromatherapy: This is the use of oils and scents to relax the body. Some people use oil burners or scent sticks in the room; others wear a few drops on their clothes.

• Eating well :Eating well means more than eating healthily here. It is about enjoying a meal that we like, for instance enjoying a nice salad or a pizza but the idea is to feel good after the meal rather than sluggish or gloomy

• Breathing exercises :Breathing exercises are most likely the simplest and the most straightforward technique for relaxing and collecting your thoughts. It involves taking slow deep in-breaths through the nose and breathing out slowly through the mouth.

• Physical relaxation: Probably the second easiest of them all; it requires drawing yourself into a very comfortable position and loosening up (generally lying down with a pillow). Like most relaxation techniques, it also requires you to take deep breaths and to focus on relaxing your body, part by part until you are totally stress-free. It may also include focusing on optimistic and positive thoughts.

• Guided imagery: Visualising images that have a personal hopeful and optimistic meaning. The purpose is to associate those images with elevating thoughts in order to feel relaxed and stress-free.

• Zen: Zen is more than a relaxation technique; it is a way of life that involves being relaxed about things that you experience. It also places a strong emphasis on peace, love, self-awareness and control.

• Relaxation audiotapes: This involves listening to a tape of repeated statements, which are motivating and inspirational and very often leave you in a state where you are so relaxed that you could fall asleep. The audio accounts range from body relaxation instructions to uplifting mental visualisation.

• Learning yoga: Yoga is a spiritual technique that helps to unite body and mind, and may entail uniting with a higher being. Yoga exercises involve deep breathing and specific positions. The key to yoga is to find a balance between body and mind.

• Reflexology: This is a technique that involves touching specific body parts in order to stimulate specific organs. It is supposed to bring serenity and healing.

• Prayer and reflection: Many people instinctively pray or reflect when they experience trials, even if they never did before. Death and dying usually encourage people to reflect on a higher level of being and can therefore open prayer channels. This helps some people to feel that they are not alone and to share or deepen their experience at another level.

• Faith: Some parents have expressed their faith in God after losing their baby. It made them feel at peace to believe that their child was too pure for this earth and practising faith was for them a way to accept their child’s fate from an optimistic perspective.

• Acupuncture: This involves putting needles under the skin on specific spots. It is supposed to help the body relax. However, this should only be done by trained professionals and if you are in doubt check with your doctor or local professional association.

• Hypnosis: As above, only trained professionals, who are often psychologists, should perform hypnosis. It usually involves being relaxed and following directions in order to explore your emotions.

Some of these techniques will appeal to one parent while having no meaning for another. Of course, relaxation methods are all about personal choices and suitability. If any of these help, I would encourage you to practise them.

Sometimes trying to relax during a distressing time can be strenuous and seem impossible. Allow yourself to relax and to have cheerful moments even when you are constantly being reminded that you are carrying a child with a medical condition.

Exercises

• Gymnastic ball exercises :Sitting on the ball raises your hips higher than your knees. This encourages your baby to settle into an optimal position for birth. Second, the softness of the ball absorbs your weight and helps to prevent and relieve back strain. Kneeling over the ball takes the weight off your back and is great practice for labour, while sitting on the ball is ideal for practising your pelvic-floor exercises and rolling with the ball encourages rhythmic movement and pelvic mobility. Finally, natural movements with the ball help to tone your internal and external pelvic muscles.

• Pelvic-floor exercises: sit upright on a chair with a hard, flat surface and squeeze your pelvic muscles tight; hold for ten seconds and relax them slowly. You can work your way up from five to sets of ten, done two or three times each day.

• Upper body exercises: Lift or hold some weights until the muscle begins to fatigue. A simple way to start is to carry a medium-size food can, while you do something else such as walking or talking to someone.

• Relaxation exercises: Lie on your left side, with knees, hips, shoulders and elbows slightly bent; make yourself comfortable with pillows in a quiet place. Breathe slowly and deeply. Focus on an image of your baby growing healthy and strong. Some people choose to listen to uplifting music; others buy narrative tapes designed for guiding them through the relaxation journey.

• Back stretches: Get down on your hands and knees, keep your arms as well as your knees apart, and maintain straight arms. Tighten your abdominal muscles and pull in your buttocks muscles and round your back while breathing in. After five seconds, relax your back into a neutral position and breathe out. You can work up to a series of three a day.

Bonding with your unborn child

If you are expecting a child with a medical condition, emotional withdrawal during the pregnancy can seem like a form of self-preservation. As parents, you are protecting yourselves from all the emotions you may be feeling, such as grief, anger, sadness and apprehension about a situation beyond your control.

What usually comes naturally in ordinary pregnancies can take a lot of demanding work to establish when you are carrying a child with a critical condition. Some parents are frightened that creating a bond with their baby will make the separation harder to bear. They believe that by pulling away emotionally, they will lessen the pain. The reality is that parental love cannot be controlled or limited.

Another point is that parents often visualise a baby they do not know or who scares them. That same child may remind them of the heartbreak they are experiencing. I sometimes hear of parents’ astonishment after their child’s birth when they describe feeling immediate love towards their baby despite his condition.

The daunting ideas they had turned out to be false and, although their baby was sick to some extent, he or she was still just as perfect for them. Also, unfortunately, the pain felt after the loss was just as intense whether they withdrew emotionally or not during the pregnancy. The only difference is the kind of memories they have of the pregnancy.

There are several ways to bond with your unborn baby and I would encourage all of you to try and explore which ones suit you best:

• Talking, singing or playing music to your baby: From 16 weeks onwards, your baby has developed reactions to sound and can recognise your voice and will respond to the different noises you make. Feel free to talk about anything, from cheerful subjects to the condition itself.

• Touching your baby: By touching your baby through your abdominal wall, you are communicating. Many parents described playing a gentle game of ‘kicking back’, in which they pushed the baby and the baby pushed back in return.

• Following your baby’s physical development: Whether this is weekly or monthly, by following your child’s progress, you are most likely to start visualising him or her at different stages. By imagining your baby, you start giving him an identity.

• Massaging your belly: Once again, this is about contact and visualising your child will be natural considering that closer to the end of the pregnancy you and your partner will actually be able to feel distinct parts of your baby’s body (foot, bottom, head).

• Involving your partner or other children: Involve them in the physical pregnancy, discuss the baby and what he has ‘done’ today.

• Writing to your baby: You may want to put your feelings down on paper. Whether in a journal, in a letter or simply in a notepad, make sure you tell your baby how you feel; how you feel about him or her, how you feel about the diagnosis, how you feel about your future with or without him. Although this is highly emotional, this technique will release your emotions and it can help you greatly in the grieving process.

• Giving your baby a name and using it: By giving your child a name, he or she becomes your child rather than a sick foetus. He or she becomes a part of your family and a sibling for your other children. He or she becomes a reality both for you and for your surroundings.

THE PROBLEM WITH diagnosis of long-term or life-threatening disease in unborn children is that the mother may be pregnant enough for others to see it, and questions that would not be asked in the early stages of pregnancy will now arise from all sides. The questions that many people will ask are about the mother’s due date, the sex or name of the baby and how happy the family is; these can be heart-breaking conversations for a parent who knows the baby will die shortly after birth or has a severe condition.

Parents have a choice depending on whom they talk to; to answer those questions, to change the topic of the conversation or to tell the person that the child is ill. Once again, this is totally personal and there is no right or wrong approach.

However, be aware that different answers will imply different reactions and not all are welcomed. For instance, let’s say that you have just divulged to the person operating the till at your local supermarket that your child will die and the only answer you get is how much you need to pay for your groceries, you could be left feeling exposed and alone in your tragedy. Also, sometimes the people you talk to are not prepared for such news and may try to diminish its meaning to protect their own emotions. I would say that if you feel the need to talk, try to choose someone whom you know will care.

The next section provides suggestions to assist others to understand and respect your unique situation and choices. One may ask, ‘Why should you help others with your child’s diagnosis?’ It is an underlying but real consensus that ‘what is defective is better gone and forgotten’. The following tips are not designed to ‘help’ others; they are designed for you to bring about changes in other people’s attitudes towards your pregnancy and precious baby in the event that they are having trouble facing your reality. If you have just found out about your baby’s condition, you may not be ready to talk about it, nor confront everybody about ‘your reality’. Feel free to read those lines later down the track.

Finally, if you never feel the need to talk about your pregnancy to anyone, please do not feel pressured to do so. It is a personal choice.

Tips for ‘helping’ others with the diagnosis

• Refer to your child by his or her name

Once again, it is much harder to pretend the situation is temporary if you refer to the ‘situation’ as a ‘real human being’.

• Allow yourself to express your pregnancy ‘news’ verbally

The baby moves and does new things and, like any pregnant mother, you experience tiredness and other pregnancy symptoms.

• Talk about your plans

For example, if you have decided to have balloons, pink or blue flowers or anything at all at the birth or funeral of your baby, let others know if you want them to appreciate your need. It is a way of sharing with friends and family a small part of your child’s story.

Talk about all the things your precious child will be able to do.  Whatever the disability, he or she is a great individual with his or her own potential and uniqueness. They can learn new skills, and be great friends. Do not (or do not let others) underestimate the fantastic life your child will live and give you.

Tips for friends during the pregnancy

• Show support

Carrying a child that will die or has a severe condition is a very traumatic experience. It may mean listening to your friend talking about their experience, holding their hand, cooking them a meal or not avoiding them or the subject. You could contact organisations that help with child loss and have sent out helpful bereavement information and materials.

• Try to understand the situation

Find out what you can about the diagnosis, listen to your friend’s wishes and plans and allow them to experience a range of emotions without patronising or judging them.

• Treat your friend as your friend!

Rather than as some very unlucky person who is going through a terrible time. Within the next few months, your friend will grieve over the baby’s diagnosis but he or she will also have days on which they are feeling okay and would love to do something, or talk about something else. Keep encouraging a return to normal activities but be timely and sensitive.

• Don’t try to give advice

Like telling them to get over their feelings, telling them how imperfect their child will be, to remember their other children, or treating them as if they are irresponsible or telling them what you would do. It is neither your child nor your choice.

Know that words will not ease the pain; avoid using a higher being’s will to justify the death unless you are certain it is already your friend’s belief; be patient even if they seem withdrawn or angry at first. Be sensitive to the fact that they may not want to see or hold babies of the same age group as the child that they have or had.

The support of friends and family plays a vital part in this journey. It is my belief that this support will make a huge difference in the parents’ lives. There are also many other sources of support, such as support groups for parents going through the same experience. In the event of parents having little support from others, be gentle on yourselves. You are the one having this child and whatever your decision or your plan is, you need not to worry about people’s criticism if you encounter any. Remember that at the end of the day, you will have to live with yourself and with your choices, while others will move on with their lives.

Additionally, just as your parents were shocked by the news, so may your family and friends be. Give them time to come to terms with the situation.

NOT ALL PARTNERS react identically to the heartbreaking news. After the initial shock, some believe it would be best for the whole family to terminate and get on with life, while others cannot imagine terminating a child they already love. Some need to talk about the child; others would rather not. The purpose of this chapter is to provide support for couples at a time when they may find their relationship is being put to the test and it may be difficult to reach a joint decision from a wide range of possible reactions and personalities.

It is well-known that men and women differ in many respects, particularly when it comes to emotional issues. For couples finding out their child has a poor or fatal condition, remember that if you reacted differently before the diagnosis, the chances are you will still do so afterwards. There is no right or wrong way to approach this difficult journey. Keeping the communication channels open and trying to reach such a major decision in just a few days may be the most challenging experience you will face in your paths of communication as a couple.

• When the time comes for both parents to discuss the options and/or the loss, here are a few tips to remember:
• Good communication skills are a mixture of expressive and listening skills.
• Give each other undivided attention (make sure no distraction will interrupt the discussion, such as the phone, television or other family members.)
• Summarise what each other has said, especially as the conversation gets tense or emotional.
• Use ‘I’ rather than ‘you’ statements.
• Use writing as a tool if you find it easier.
• Focus on the present (or future if appropriate) and try to avoid past disputes, while acknowledging that stress may bring past issues to the surface.
• Maintain respect and take breaks if you need to.
• Forgive each other for failings and mistakes.
• Don’t expect your partner to read your mind.
• Mostly, listen to one another, remembering that you are both suffering and that you love each other.

I would also encourage you to remember that as individuals, we all come with emotional baggage and past losses. We may still be dealing with some of these, which may render this loss even more complicated as emotions and issues become combined.

Father and mothers grieve differently:

• Some members of our former communities pictured vulnerable mothers shattered and strong fathers supporting their wives. There was a huge belief rooted in childhood that seemed to convey, ‘Fathers don’t cry, they don’t love their unborn children and their wives will crumble if they show any emotions’. As a result, many fathers still feel pressured to be responsible for supporting their families, and some of those mothers experience resentment when they believe that their partners are feeling no pain.
• While most women prefer to talk and express their emotions, many men choose to keep busy to avoid the pain, or because they may not know what else to do,  and while women may decide to talk about the problem, many men may attempt to ‘solve’ the problem in any way they can, which often puts the couple on different wavelengths. It is important to remember and accept that both parents love the baby and may have different needs at this point. However, it is just as important to understand the other parent’s needs in order to maintain a caring relationship.

Siblings

If we consider the impact of such a pregnancy on the siblings, there seem to be two elements:

a) their personal experience of losing their baby sister or brother

b) their experience, as your children, of living with your loss

I will try to explain each point in turn and its impact on siblings in more depth in this chapter. This chapter applies just as much to your anticipated loss in the pregnancy as to the loss of your child after birth, either through death or birth with a serious medical condition.

Children’s own experiences

As parents, we try to protect our children from pain and sadness even when it means trying to protect them from something as terrible as losing a sibling or helping them to adjust to having a new ‘special’ brother or sister. The truth is that no matter how hard we try, we cannot protect them from such a tragedy or trial. We can only attempt to make it as painless as possible.

Parents in this situation should try to remember that different children have differing needs, as do different age groups.

Children up to three years old

May not understand what is different but will sense that things have changed. Children under three years old may also feel scared because children in that age group have a strong need for routine and it is very likely that their routine will change to some degree, at least temporarily. They may also have a need for attention, such as hugs from their parents and reassurance. Children under three would not understand what ‘being dead’ or ‘special needs’ means.

Children aged three to six years old

This age group still does not understand what being dead or having special needs means but will realise that it is something that comes with sadness (especially in this case). Most children will wonder why the new baby was born in those circumstances and may think they have done something wrong. On the other hand, they may also believe that their sister or brother will come back or do everything like other children soon.

Children aged six to nine years old

Children in this age group understand death and differences to some extent as they may already have experienced it, sometimes through their pets dying, someone else passing away or seeing or knowing other ‘special’ people. However, they tend to need a simplified explanation of death or disability and often a simple and logical definition is enough. Many children in this age group, who experience death, start to be fearful of one of their parents (or someone close to them) dying.

Children aged ten and over

In this age group, children understand almost everything about death and special needs. They understand the concept of death being final and sometimes unpredictable, as well as the concept of having different needs and abilities, including when it involves the parents spending a lot of time with the sibling. They may also have a lot of questions about their death, the ‘after-life’ or may need time to themselves to adjust to their loss or new life. Children may express different degrees of grief as well as different ways of expressing it. Some children may show signs of regression, irritability, fears, inhibition, sleep or eating issues, while other children, especially older ones, may show anxiety and guilt patterns. Some may need to talk about their sibling’s birth or death, as well as other things linked to the experience, but may feel guilty about raising a painful topic with their parents, thereby purposely ignoring their needs in order to ‘protect’ their family.

Parents, grieving themselves, may be confused as to what to tell their children, once again thinking only about protecting them, and may use euphemisms or fabricate a nicer ending than the actual one.

• Avoid the words ‘going to sleep’, ‘going away’ as children may start thinking they (or someone they love such as mum, dad or other siblings) could also die in their sleep.
• It is also best to be truthful, as truthful as the child is ready for. In the long term, being honest with your other children will only reinforce trust and respect and then they will not resent not having been a part of their sibling’s journey.
• Try to allow them to talk about the loss. If you can’t talk about it, let someone else handle it.
• Tell them how you feel and how much you love them but also how sad you are and why you may need some time.
• Inform them about the new baby’s condition and explain the reality of what it involves, but also focus on all the things he or she will be able to do, all in a language that is appropriate to their developmental level, in a manner that they can understand.

Children’s experience of living with their parents’ loss

Not only may our children have lost their baby brother or sister as they imagined and expected him or her to be; they have also lost their parents (or at least our capacity to be parents) for a period of time. Indeed, many parents are thrown into a world in which they can barely breathe, let alone take care of other children, physically and emotionally.

No matter how guilty you may feel or how others may tell you ‘to get a grip’, finding it difficult to cope with your other children is normal. In fact, among all the testimonies I received, there were two main kinds of grieving reaction immediately after the birth or loss; some parents give their other children their entire love and attention and others cannot cope with anything resembling a child because they are grieving and cannot deal with extra reminders of their tragedy.

Again, there is no right or wrong approach and undoubtedly some parents would not fit in either of those groups. It is merely an observation that most parents losing children need time to adjust to their ‘new self ’ and it may involve detaching from or getting closer to their other children. Your parent-child relationship could also be temporarily affected. As mothers may be having trouble carrying on the ‘children and home’ routine, some fathers take on a larger role than usual. Some children react by being distant from one parent or extra close to the other one.

Another view is that seeing their parents distressed can upset children. I guess it would be beneficial if children did not have to witness full-on nervous breakdowns but it is totally unrealistic to expect children not to notice the sadness, the change in their routine and the morose atmosphere. Many specialists have stated that being honest and involving the child or children in their parents’ journey was the most productive way to ensure the family remained close and to learn to rebuild their life together.

They are many books available for parents, families and teachers to discuss death, special needs and related feelings to children. Depending on the child’s age, various activities can also be helpful.

In younger children, sand play, pretend play, telling stories, drawing or painting can be very useful in expressing their feelings. Older children might prefer to talk with their friends or family, write in a journal, read about death or the condition or spend time by themselves. A change in children’s habits is normal and is their way of grieving. Parents can expect their child or children to act differently and provide opportunities for emotional outlets. Having said this, when grief becomes threatening for the child or somebody else’s well-being, it is recommended that the family seek counselling (suicide threats, self-harm, substance abuse, harm to others, ongoing depression are examples of when this may be necessary).

In this chapter, we will consider questions that most families have when finding out that their child has a condition, as well as different options for the pregnancy. There are no right or wrong answers, just feelings that other parents have shared. It is important that parents know they have the right to ask any questions they may have, as well as have them answered.

Many parents have explained that they needed to explore all their options and physically imagine each outcome in order to be able to decide whether it was a plausible choice for them. For instance, parents might list options and their ‘pros and cons’ in terms of personal choices and capabilities. Before choosing anything, try to imagine this choice in the short term as well as in the long term. If the choice feels right (as right as it ever would when talking about foetal diagnosis) both in the short and long term, you are more likely to be content with your decision.

How will the pregnancy be affected?

In many instances, the pregnancy is looked at differently from other pregnancies, although generally little or nothing is wrong with it as such. In some cases, the mother can carry on like any other mother with only monthly check-ups. The child, on the other hand, depending on the condition, may need scans and other tests to determine the next course of action.

From an emotional point of view, the pregnancy will most likely be challenging. Indeed, stress and other factors will very likely make the mother very tired, upset and ultra-sensitive.

How will the baby be affected?

This is certainly an essential question. Different diagnoses have different outcomes and parents have different levels in terms of what they can handle physically and emotionally. This question is especially important for parents expecting children who will live with ongoing symptoms.

Will my baby look different?

This is a question that may really worry and even haunt some parents. They may imagine the worst possible scenario that will traumatise them and their other children for life. You have the right to be prepared for differences and to expect medical staff to discuss them with the utmost respect.

Will my baby suffer?

Ethically, this is an extremely difficult question to answer on someone else’s behalf, especially babies who cannot express themselves verbally, although pain relief will always be available at birth if your baby seems uncomfortable. Most often, however, each condition comes with different concerns and the medical staff should be able to meet your child’s needs. For many conditions, the concern is essentially that the baby does not suffer but, once again, your specialist should be able to tell anything that you wish to know.

How likely is the next child to have the same condition?

Some conditions are genetic; others appear early in the pregnancy, as what I call ‘random development’.

In both instances, parents have the right to be referred to a genetic counsellor, who will explain the condition and the likeliness of its recurrence in subsequent pregnancies. In the case of an autosomal recessive genetic condition, the recurrence is often a one in four chance with each pregnancy.

What are my options?

The laws regarding termination vary from state to state and from country to country. In states and countries where termination is generally illegal, hospital boards or committees decide on a case-by-case basis whether it is an option that they can offer the mother. For fatal conditions and in many places, there are usually few difficulties in obtaining a termination. The gestation of 20 weeks is considered a cut-off point because babies under 20 weeks do not need to be registered. Once again, this cut-off point varies from state to state and country to country.

• Mothers have the choice of inducing labour before the baby would be legally viable. Babies usually die during labour, as they are too young and too fragile to survive the labour.
• They have the choice of terminating the pregnancy by injecting a drug into the bloodstream, which will stop the child’s heart, and the mother then proceeds to a vaginal delivery by induction. This technique is used if a decision is made close to 24 weeks of gestation when the baby might be born alive. If unable to access a termination publicly, the parents may be referred or ask to be referred to a private clinic or to another hospital or state. Similarly, if you do not want a termination but feel unsupported you can ask to see another doctor or hospital.
• Mothers can decide to continue the pregnancy for as long as possible and have their child naturally. If born after 20 or 24 weeks, depending on your country, the baby is given a birth certificate and would receive a death certificate and treatment (if possible) is given. Even if your baby is less than 24 weeks old, you can choose to have a funeral and name your baby. This is very much a matter of personal choice.
• Where the child does not have a fatal condition and will live, some parents may feel inadequate caring for him or her and, while they may have refused an abortion, they may not be certain of keeping the baby either. Adoption, respite care, foster care, sharing family care or placing the child within a special boarding school may be options for some families and are worth considering before any assumptions are made as to what can be offered.

Doctors, case managers and counsellors may be able to help you to explore what is the best option for you. Once again, there is no right or wrong answer. It is about living with a choice that suits you as parents. I would like to stress that whichever solution you decide on, there is always likely to be someone who will criticise you for the choices you have made. This is usually someone who has never come close to a making a similar choice and it is important to be gentle on yourselves. In every case, you have the right to a second opinion or a referral to another doctor. If no doctor in your area is willing to carry out your choice, the doctor you see still has a duty of care to explore options for you. This applies whether you wish to terminate or continue your pregnancy.

For many families, finding out about their child’s condition means hearing medical terms, stereotyped jargon and, for most of us, being talked to in a foreign language. Many have described the day of receiving the diagnosis as like being in a beehive; lots of buzzing and running around, but no recollection or comprehension of what was really happening.

On finding out their child’s condition, parents have the option of finding out more about the diagnosis and trusting their doctor with the condition or choosing not to know anything about it. Considering that most parents will be given a choice to continue or to terminate the pregnancy at this stage, many mothers and fathers want to know what they are ‘up against’ in order to take such a decision. For other parents, knowing about the condition is not about deciding whether to continue or terminate the pregnancy but whether they are prepared to care for a child with special needs or to evaluate the baby’s chances of survival.

Regardless of these reasons, it is important for parents to know where they can find information about their child’s condition.

• Encyclopaedias and dictionaries are always a great resource to begin with. They will give you a basic definition of a specific term used by the doctors and definitions of ‘common’ conditions.
• The internet can be the most efficient way to find information quickly, but beware of unwanted or inaccurate search results. For instance, typing a word could bring you an enormous list of documents including medical reports and fabricated articles. A useful way to search for helpful information is to type in a general search term, e.g. ‘what is Potter’s syndrome?’ and to look for web page results rather than just website results. Indeed, when you do a search for websites, the search engine will look for specific words within a website description.
• Your national organisation for specific types of conditions (Kidney Foundation, Spina Bifida Association, etc)
• Medical specialists and local support groups

There is an approximately 20% chance of being diagnosed a ‘high-risk’ mother to-be in any given pregnancy. The psychological and social impact of such a diagnosis can be tremendous, especially if it recurs after each pregnancy or has had a critical outcome, such as a disability or death of a baby.

The first thing to consider is the amount of stress a mother, her partner and the other family members may experience as a result of the condition. For instance, it may be that the things the mother used to do within or outside the house can no longer be managed. Often tasks such as housework, grocery shopping, paying bills, child-care and other general housekeeping have to be split with the rest of the family, bringing stress, anxiety and re-organisation. Financial constraints may also arise. For example, the mother may have to give up work for a while and may not be entitled to paid leave or may receive a lower benefit payment. Also, from an emotional point of view, the parents may also experience distress or fear of something happening to the baby while feeling angry and frustrated about the situation. Alternatively, it is not uncommon for some parents to try to diminish the potential impact of a high-risk pregnancy by carrying on just as before.

Family members may experience a range of feelings, from denial to blame, guilt and a sense of failure or ambivalence. In some circumstances, denial is potentially harmful to both mother and child. Certainly, some parents may react with disbelief to the diagnosis and continue to run the household and carry out work or other activities just as they did before the pregnancy. Guilt can affect either of the parents; the mother may feel guilty if it is her health that is the source of the risk or the father may feel guilty if he feels he is responsible for the pregnancy. The perception of ‘failing’ in the pregnancy may be problematic if either of the parents associates successful childbearing with success as a man or a woman, husband or wife. Indeed, they may lose confidence, self-esteem, stop trusting their bodies or themselves and may even imagine that everyone around them also regards them as a failure. Another common emotion for the family experiencing a complicated pregnancy is ambivalence or mixed feelings. For instance, the mother may feel worried for her child while also feeling angry with him or her for being the ‘basis’ for the current situation or complications. The father may feel sorry for his wife who is forced to rest in bed, but also feel resentful towards her for having to do all the chores after coming home from work. Similarly, the children may feel happy to be involved in the ‘team work’ while feeling bitter about the new sibling and all the attention around him or her. These are only examples of how the family dynamics may be affected by any enforced changes in family life or its routine following the diagnosis of a high-risk pregnancy. In order to assist with such stress factors and to prevent major crisis within the family circle, here are some suggestions that were found useful by other mothers in similar situations.

• Approach your hospital team – obstetrician, midwife, paediatrician, chaplain, nurses and counsellors beforehand – introduce yourself, and get to know them.
• Have an ‘emergency’ plan ready, in the event that you have to be hospitalised:organise and list who would pick the children up, provide meals, do household chores and so on.
• Learn about your condition and inform your family.
• Employ a cleaner, babysitter or gardener to suit your needs.
• Rearrange family activities according to your health requirements or the instructions of your obstetrician (play games together on the bed for the bedresting mother or watch movies or reading books rather than playing outside for the mother who has to sit).
• Make plans as a family for things you will do after the baby comes home (for example, holidays, rearranging the children’s rooms or shopping trips).
• Relaxation exercises
• Quality time with each family member.

This page is dedicated to all the parents who just received devastating news.  You may be faced with many options you had never heard of previously. You most likely have been thrown into a world you assume was only for others.

We don’t have the answers. Hopefully, Knowing that other parents have been there and how they coped may be useful to you.

I would encourage you to get a hold of “High risk pregnancy and Foetal diagnosis which is a book I wrote after my own experience with carrying Talina to term. It is a simple companion written by parents for parents and provides testimonies, practical and emotional support.  It can be found from Free Association Books and is available from CAPERS bookstore, AMAZON, Footprint, FAB and most online Bookstores.

Emotional and social issues of a high risk pregnancy

The Bombshell (finding out about the diagnosis)

How to find our more about the diagnosis

Questions, options and decisions

Impact on the family

Friends and Strangers

How to enjoy your pregnancy

Creating Memories

Funeral options

“I finally accepted that I couldn’t save my baby and that she would die. But there was one thing I could for her and that was to let her die in my arms. That, I could do for her”