Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)
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A Double Sorrow

Why Our Baby? A DOUBLE SORROW

For parents who give birth to a baby with severe disabilities, the grieving process may need to be completed twice.

The first period of grieving begins when your baby is born and you mourn the baby you expected but did not have. Grieving at the death of your baby or child is accepted as a natural reaction, but what those around you may not realise is that it is normal to grieve the birth of a baby with a chromosomal disorder.

The second period of grieving occurs if your baby or child dies.

The grief process involves moving through different stages. The sequence and the duration of each stage can vary from one individual to another. Some emotions you may or may not experience include:

Shock can result in a feeling of numbness and it can take some time before the news sinks in. You may find yourself in denial and emotionally removed from the events that are taking place around you. This is nature’s way of protecting you from the trauma, and your system will adapt over a period of time.

Anger is a normal and acceptable reaction and can be directed at God, the doctors, nurses, yourself, or even your baby. Other parents may feel a profound sense of injustice and ask, “Why me?” or “What did I do to deserve this?”

Guilt feelings may be very strong after the birth or death of a baby with a chromosomal disorder. There is a strong need to find someone or something to blame. You might ask yourself: “Did I do something wrong?’; “Could I have prevented this?’; or “Why do I feel negative towards my baby?”.  You might also say to yourself: “If only…..” or “God is punishing me” etc. By talking about this to the doctor, your partner, family, another parent, friend or cleric you can come to understand that you should not feel guilty

Loss and loneliness and a yearning for your baby, or for what might have been, can be very intense, even if your baby is alive. These feelings can be compounded by the fact that those around you are unsure of how to approach you.

Depression is a natural reaction to loss, and the symptoms can vary in intensity. You may feel dejected in spirits, withdrawn, unresponsive, with poor self-esteem or feel that life is not worth living.

The birth of a baby with serious disabilities may put a strain on a marriage, or family unit and siblings. Now, more than ever, the family and other children and grandparents need to be there for one another. All family members should talk about what it means to them – their grief, their needs, their fears etc.

Even though you may love and feel very maternal or paternal towards your new son or daughter, there can be a sense of sadness, loss and emptiness, similar to a bereavement. You will need to mourn the loss of the healthy baby of your dreams and accept this new baby for herself.

A FATHER’S GRIEF

Society in the past did not encourage men to express their emotions. This attitude is now changing. As a father, you may experience the same feelings of shock, anger, guilt, loss, loneliness and depression as your partner. You may want to cry but feel you must be strong for your partner or family. People tend to forget that it is your baby too. You may experience a sense of non-involvement and isolation if you are asked, “How is your wife/partner?” and they do not ask how you are. You will need to grieve and express your emotions in order to move forward. Share your grief with your partner, a friend, or a father who has gone through a similar experience.  S.O.F.T can help you make a contact.

GRANDPARENTS’ GRIEF

You will probably be as shocked and confused as your children when you know what is happening and understand that there is a problem.

There are conditions in pregnancy where the outcome is certain, others where the prognosis is uncertain and again others where it is known that the baby will die before or soon after the birth. Ante-natal care may need to be arranged in a special pre-natal diagnosis unit where extra care for the mother and baby will be organised, including access to a special care baby care unit.

Grandparents, whose children have gone through this experience often say they feel helpless. Although you can offer support and advice, you cannot take the pain away. Watching your child suffer is perhaps the hardest thing of all. You may feel lack of power and control over the situation. These feelings are very common, and do not mean that there is anything wrong with you. You may find it will help you if you can acknowledge your feelings, be yourself and talk to someone else about them.

If the baby dies it is important to recognise that you too have suffered a loss and you may need time to grieve. The loss of your expected grandchild may hit you very hard, and this may even be more difficult if you are trying to support your children through their own hurt.

The need for an explanation as to why there is a problem with the baby is natural. The parents should receive as much information as is available about what is wrong with the baby, and what caused the abnormality, together with advice about the future.

The baby’s parents often have feelings of guilt about what has happened; grandparents too sometimes feel that they are somehow to blame, or at fault. This feeling can be even stronger with inherited genetic disorders, and is entirely understandable.

Support and counselling for grandparents may be arranged through the Pre-natal Diagnosis Clinic or through the Medical Social Work Department and is available in most maternity hospitals.

S.O.F.T. can put you in contact with other grandparents who have gone through a similar experience.    

 

PHYSICAL SIGNS OF GRIEF

The depth of sorrow you have experienced may affect your body in a physical way. You may notice:

  • Crying: this will vary with the individual.
  • Sleep can be disturbed, often accompanied by bad dreams or nightmares.
  • A constant need for sighing to catch your breath.
  • A feeling of heaviness in your chest like a heartache.
  • Palpitations.
  • A change in your appetite.
  • Shaking, shivering or feeling cold.
  • Exhaustion, no energy; the smallest task can seem a major effort.
  • Difficulty in concentrating and a feeling of disorganisation.
  • Restlessness and irritability.

 

If these physical symptoms of grief become a burden and persist, check with your family doctor in order to verify that there is no underlying medical problem.

 

RECOVERY FROM GRIEF

It is important that you go through the grieving process in your own way and at your own pace. Sometimes, a father or mother appear to accept the situation initially, but at a later date find that they are not coping very well. The opposite is equally true. This can have its advantages as one partner may be able to support the other at different times. Everyone experiences grief in their own way, and if two people do not show grief in the same way, this does not mean that they are not grieving. However, if you are a single parent you may feel doubly alone in your grief.

A sorrowing person should not try to suppress their emotions: to show grief is a normal and necessary part of the grieving process. It helps us to accept what has happened. Communication at this distressing time is important for all the family. Share your feelings and emotions and tell your story time and time again. This will help you to cope. Talk to your partner, your children, family or close friends. S.O.F.T parents who have gone through the same feelings themselves may be helpful to talk to at this stage.

Points to remember in recovery:

  • You can only do your best, one day at a time.
  • Be realistic about what you can expect from yourself.
  • Understand and accept the loss of energy, both emotional and physical.
  • If you are caring for, or helping care for your baby, be aware that you may experience conflicting thoughts and emotions.
  • You may need time to yourself: this is a healthy selfishness.
  • Comfort yourself with small pleasures.
  • If you have a bad day, put it behind you and approach the next day with a fresh frame of mind.

The symptoms of the grieving process should ease with time. In the Dual Process Model of Grief, loss and restoration go on at the same time. It is normal to get flashbacks of the deceased occasionally, but once a person can adjust to a new life without the loved one and talk about them, then they will be at ease. If you are finding it particularly difficult, seek the help of a family member, friend, another parent, family doctor, a sympathetic counsellor or S.O.F T.

Other organisations available to offer support at this time are as follows: