Receiving a prenatal diagnosis is a very difficult life changing event. There are no right choice and only two sad and painful choices. Some will choose to terminate their much wanted pregnancy. This section is to help you with some suggestions and information. Some of those sections have been written for families who may choose to carry to term as well.
How to find our more about the diagnosis
The laws regarding termination vary from state to state and from country to country worldwide. In states and countries where termination is in fact illegal, hospital boards or committees decide on a case-by-case basis whether termination is an option they can offer the mother. For lethal conditions, there is usually no problem in accessing termination in many places. The gestation of 20 weeks is considered a cut off because babies under 20 weeks do not need to be registered. Once again, this cut off 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 pass away during labour, as they are too young and too fragile to survive the labour.
Mothers have the choice to terminate the pregnancy, by means of injecting a drug into the blood stream, 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 gestation when the baby might be born alive. If you are unable to access a termination publicly you 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 twenty or twenty four weeks depending on your country, the baby is eligible to receive both Birth/Death Certificates and treatment (if possible) is given. Even if your baby is less than twenty-four weeks gestation, you can choose to have a funeral and name your baby. This is very much a personal choice.
Doctors, Case Managers, and Counsellors might be able to assist you in exploring the best option for you. Once again, there is no right or wrong. It is about living with a choice that suits you as parents. I would like to stress that whichever solution you decide upon, there will always be someone disapproving who will criticize you for the choices you made. Someone usually who never came close to a making a similar choice, be gentle on yourselves. In all cases, you have the right to a second opinion or referral to another doctor. If no doctor in your area were willing to carry on your choice, that doctor would have a duty of care to explore options for you. This applies whether you wish to terminate or continue your pregnancy.
There was a young woman who had been diagnosed with a terminal illness and had been given three months to live. So as she was getting her things “in order” she contacted her Rabbi and had him come to her house to discuss certain aspects of her final wishes.
She told him which songs she wanted sung at the service, what scriptures she would like to read, and what outfit she wanted to be buried in. Everything was in order and the Rabbi was preparing to leave when the woman suddenly remembered something very important to her
“There’s one more thing” she said excitedly. “What’s that?” came the Rabbi’s reply. “This is very important the young woman continued. “I want to be buried with a fork in my right hand.”
The Rabbi stood looking at the young woman not knowing quite what to say. “That surprises you doesn’t it?” “Well, to be honest, I’m puzzled by that request” said the Rabbi. The young woman explained, “My grandmother once told me this story, and from there on out, I have always done so.I to pass along its message to those I love and those who are in need of encouragement.
In all my years of attending socials and dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitably lean over and say “Keep your fork.” It was my favorite part because I knew that something better was coming…like velvety chocolate cake or deep-dish pie Something wonderful, and with substance!” So, I just want people to see me there in that casket witha fork in my hand and I want them to wonder “What’s with the fork?” Then I want you to tell them…”Keep your fork, the best is yet to come.”
The Rabbi’s eyes welled up with tears of joy as hugged the young woman good-bye. He knew this would be on of the last times he would see her before her death. But he also knew that the young woman had a better grasp of heaven than he did.
At the funeral people were walking by the casket and they saw the cloak she was wearing and the fork placed in her right hand.
Over and over , the Rabbi heard the question “What’s with the fork” The story was told and the pastor told the people , next time you reach down for you fork, let it remind you ever so gently. “THAT THE BEST IS YET TO COME”
shared by Ron….Heavenly Angels
~~~~~~~
I thought of you and closed my eyes,
And prayed to God today.
I asked what makes a Mother,
And I know I heard him say:
A mother has a baby,
This we know is true.
But, God, can you be a mother,
When your baby’s not with you?
Yes, you can he replied,
With confidence in his voice.
I give many women babies,
When they leave is not thier choice.
Some I send for a lifetime,
And others for a day.
And some I send to feel your womb,
But theres no need to stay.
I just don’t understand this God,
I want my baby here.
He took a breath and cleared his throat,
And then I saw a tear.
I wish that I could show you,
What your child is doing today,
If you could see your child smile,
With other children who say:
We go to earth and learn our lessons,
Of love and life and fear.
My mommy loved me oh so much,
I got to come straight here.
I feel so lucky to have a mom,
Who had so much love for me.
I learned my lessons very quickly,
My mommy set me free.
I miss my mommy oh so much,
But I visit her each day.
When she goes to sleep,
On her pillow’s where I lay.
I stroke her hair and kiss her cheek,
And whisper in her ear.
“Mommy don’t be sad today, I’m your baby and I’m here.”
So you see my dear sweet one,
Your children are Ok.
Your babies are here in My home,
They’ll be at heavens gate for you.
So now you see what makes a mother.
It’s the feeling in your heart.
It’s the love you had so much of,
Right from the very start.
Though some on earth may not realize you are a mother,
until their time is done.
They’ll be up here with Me one day,
And you’ll know that you’re the best one!
~Author Unknown~
~~~~~~~
“These are my footprints,
so perfect and so small.
These tiny footprints
never touched the ground at all.
Not one tiny footprint,
for now I have wings.
These tiny footprints were meant
for other things.
You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angel’s tears,
of joy and not from pain.
You will see my tiny footprints,
in each butterflies’ lazy dance.
I’ll let you know I’m with you,
if you just give me the chance.
You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.
Most of all, these tiny footprints,
are found on Mommy and Daddy’s hearts.
‘Cause even though I’m gone now,
We’ll never truly part.”
~Unknown
~~~~~~~~~~
“Daddy please don’t look so sad, momma please don’t cry.
Cause I’m in the arms of Jesus, and he sings me lullabies.
Please try not to question God, don’t think he is unkind.
Don’t think he sent me to you and then changed his mind.
You see I’m a special child, I am needed up above.
I’m the special gift you gave Him, a product of your love.
I’ll always be there with you, so watch the sky at night.
Look for the brightest star and know that’s my halo’s brilliant light.
You’ll see me in the morning frost that mists your window pane.
That’s me in the summer showers, I’ll be dancing in the rain.
When you feel a gentle breeze from a gentle wind that blows.
Know that it’s me planting a kiss upon your nose.
When you see a child playing and your heart feels a tug,
Don’t be sad mommy, that’s just me giving your heart a hug.
So daddy don’t looks so sad and momma please don’t cry.
I’m in the arms of Jesus and he sings me lullabies!
~Unknown~
~~~~~~~~~~
Don’t let them say, I wasn’t born
That something stopped my heart
I felt each tender squeeze you gave
I’ve loved you from the start.
Although my body you can’t hold,
It doesn’t mean I’m gone.
This world was worthy, not, of me
God chose that I move on.
I know the pain that drowns your soul,
What you are forced to face.
You have my word, I’ll fill your arms
Someday we will embrace.
You’ll hear that it was “meant to be,
God doesn’t make mistakes”
But that won’t soften your worst blow..
Or make your heart not ache.
I’m watching over all you do,
another child you’ll bear.
Believe me when I say to you,
That I am always there.
There will come a time, I promise you
When you will hold my hand,
Stroke my face and kiss my lips
And then you’ll understand.
Although, I’ve never breathed your air,
Or gazed into your eyes..
That doesn’t mean I never “was”
An Angel Never Dies……..
~Unknown
~~~~~~~~~~~
Please don’t tell them you never got to know me
It is I whose kicks you will always remember,
I who gave you heartburn that a dragon would envy,
I who couldn’t seem to tell time and got your days and nights mixed up,
It is I who acknowledged your craving for ice cream by knocking the cold bowl off your belly,
I who went shopping and helped you pick out the perfect teddy bear for me,
I who liked to be cradled in your belly and rocked off to dreamy slumber by the fire,
It is I who never had a doubt about your love,
It is I who was able to put a lifetime of joy into an instant.
~Unknown~
~~~~~~~~~~
Your little heart beating so strongly
All those months
Is silent.
Your little arms and legs
Moving so vigorously
Are still.
Milk falling like tears from your mother’s breasts
Will never nourish you.
Your eyes will never sparkle
Your little voice forever silent.
Your mother and father hold you in their arms,
Timidly kissing your soft, smooth cheek
Caressing your tiny fingers
And whispering your name with tears.
We dream of holding you
Of watching you smile and grow
Our love is always with you
Though you will never know.
~Unknown~
~~~~~~~~
We couldn’t wait to hold you
And see your pretty face.
To count your little fingers,
And check your toes are in their place.
It should have been the happiest day
To remember all our life.
But joy had turned to heartache,
No breath, no beat, no life.
We will never see you smile,
Or hear your hearty cry.
We will never be able to dry your tears,
Or share your happy times.
Our precious little Angel,
We will always know your face.
In our hearts and stars forever,
You will always have a place.
~Unknown~
~~~~~~~~~
How quietly he
tiptoed into our world.
Softly, only a moment
he stayed
but what an imprint
his footprints have left
upon our hearts.
~Unknown
~~~~~~~~~~
A million times I’ve missed you, a million times I’ve cried.
If love alone could have saved you, you never would have died.
To some you are forgotten, to others just part of the past;
but to me who loved and lost you, your love will always last.
It broke my heart to lose you, you didn’t go alone,
for my life went with you -sweetheart- the day angels called you home.
For things on earth didn’t matter, but now I feel so alone,
My heart will always be broken, my life will never be whole.
We might be parted for awhile, our hearts will always be together
for one day soon we will hold hands again forever.
~Unknown~
~~~~~~~~~
I have not turned my back on you
So there is no need to cry.
I’m watching you from heaven
Just beyond the morning sky.
I’ve seen you almost fall apart
When you could barely stand.
I asked an angel to comfort you
And watched her take your hand.
She told me you are in more pain
Than I could ever be.
She wiped her eyes and swallowed hard
Then gave your hand to me.
Although you may not feel my touch
Or see me by your side.
I’ve whispered that I love you
While I wiped each tear you cried.
So please try not to ache for me
We’ll meet again one day.
Beyond the dark and stormy sky
A rainbow lights the way.
~Author Unknown~
~~~~~~~~~
They Say There is a Reason
They say there is a reason,
They say that time will heal,
But neither time nor reason,
Will change the way I feel,
For no-one knows the heartache,
That lies behind our smiles,
No-one knows how many times,
We have broken down and cried,
We want to tell you something,
So there won’t be any doubt,
You’re so wonderful to think of,
But so hard to be without.
~Author Unknown
~~~~~~~~
To Mother and Father
There’s a corner up in heaven
Where the little babies play,
And our Blessed Mother watches
All throughout the live long day.
They’re a happy lot, these babies
Sure the reason’s very plain
For they’ve missed the world’s contagion,
Came unscathed, without it’s pain.
“Tis an angel band they call them
And you both should happy be
You’re the parents of an angel
‘Cause your baby’s there you see.
Yes, and smiling down upon you
With an innocent sublime:
Waiting: watching for the parents
He will meet again in time.
You should never be rebellious
Rather thank a loving God
For your little guardian angel
As along life’s way you plod,
With a faith that never falters
Clasping each the other’s hand
Pledge yourselves to meet your baby
In that better happy land.
~Author Unknown
Here are some suggestions to cope with grief although it will not take away the pain. Those were found helpful by parents.
Time to yourself: After such a loss, you should give yourself at least half an hour a day alone. This time could be used to reflect on yourself or to think about your baby or to do nothing at all. Do not rush back into your ?old? routine, or into important decisions.
Write: Writing in a journal or a diary can be highly therapeutic. It will help you release your emotions and say things you may not want to tell anyone.
Cry or scream :Allow yourself to cry or to be miserable. You have lost your child and no one should expect you to be over it after the day of the funeral. Do not keep your emotions bottled up.
Join a support group:Most support groups offer ?mutual support?, which is support offered by grieving parents to other grieving parents.
Learn about grief: Read books, other people?s stories or watch a video. By becoming familiar with grief and its stages, you will be able to recognise what you are feeling and understand your emotions a bit better.
Practice relaxation, exercises or prayers :Relaxation, exercises or prayers will help you feel physically and emotionally calmer and revitalise your energy
Talk to someone: You could talk to a friend or a family member or a counsellor. Needing to talk about your baby and your loss is to be expected after losing a child. It will ultimately assist in the grieving process.
Healthy lifestyle: Try to have a regular and effortless routine so your body is not stressed out or too tired. You should also try to have a balanced diet, sleep enough and avoid caffeine and alcohol.
Many parents have described feeling an awkward sensation of grief while their child was still healthy in the womb, while others even felt guilty and didn’t understand why they would grieve for someone who was still alive and / or a child that would live. This is called anticipatory grief.
Indeed, your child is still kicking and is seen as “normal” but you know that this will come to an end. You may be anticipating the next few months and starting to experience grief-like symptoms (Geldard, 1989). These may be:
Although parents experience one primary loss in losing their baby or their dream baby as they imagined him or her, they in fact experience multiple secondary losses (loss of their ideals, loss of hope, loss of their family, loss of innocence, loss of security, to name just a few). The pattern for many parents is the same as the one they will experience after the birth of their child; they go through various and intense grief emotions. The once quite strict grief stages are no longer believed to apply. However some of those emotions would be recognized by grieving parents
Anticipatory grief is more than just pre-death grief symptoms over a few months. It is a journey towards the ultimate loss but is composed of many losses of the past, present and future (Gilbert, 1996, p. 269).
Parents who lose a child often go through one or more of the following experiences listed below.
These are all natural and normal grief responses. It’s important to cry and talk with people when you need to. As you go through the process it will be important for you to receive support from friends, family and other significant person that you can experience your grief in a healthy way.
Whilst we once believed that parents “accepted” their child’s loss and/or grief over time, we now know that many other ways of ‘accepting’ may occur. Those include meaning creation and post traumatic growth. It is no longer believed that parents need to ‘overcome’ their loss, but rather find meaning in it as well as a way to co-exist with the memories of their child.
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.
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.
