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

When Your Baby is Born

Your feelings at this time

Parents are understandably upset when a chromosomal disorder is diagnosed. You were looking forward to experiencing the joys of motherhood or fatherhood, and now there are multiple problems to face, along with the threat of your baby’s death hanging over you.
Sometimes, a parent finds it difficult to accept a baby born with a chromosomal disorder. You may feel confused and disappointed and experience a sense of rejection of your new baby. If your baby has obvious abnormalities, your disappointment may be intensified.

It can be difficult to bond with your new son or daughter who seems to bring so many problems and who may not be with you for very long. Parents may also feel guilty for having such feelings and for not welcoming wholeheartedly their son or daughter. Indeed, many mothers of a baby born with a chromosomal disorder say that they feel jealous of mothers of normal babies born at the same time.

You worry how you will cope if your baby dies. It does not seem right to have to think of death so soon after giving birth. You worry how you will cope if your baby lives. You may fear for her future and wonder what quality of life she will have. You may hope that your baby will die, both for her sake, your own sake, and maybe for the sake of your other children and then feel guilty for having such thoughts.

You may feel apprehensive about your family’s and friends’ reaction to your baby You may not want them to see her. Your family and friends themselves can often find it difficult to deal with the situation. They will wonder whether to send cards or flowers, buy presents, congratulate you or express their sorrow. It may be difficult to face meeting people for the first time. Some people may not know what has happened and may say the wrong thing. Others may try to avoid you or may pretend nothing has happened for fear of upsetting you.

On the other hand, you may feel joy and hope and delight in this new life. There may be total acceptance of whatever the future may bring for yourself and your baby.

But it is okay to feel sad, angry, disappointed etc. It may take time to mourn the loss of the healthy baby of your hopes and dreams and accept your new son or daughter. These are normal feelings. Don’t hesitate to express them to a member of your family, a friend, a mother or father who has experienced the same situation, or to a professional.

It may be useful to read the section “A Double Sorrow”.

Seeing your baby

You may wish to allow some time to pass before you see your baby If you do not feel ready, ask a member of the hospital staff to describe her and to take a Polaroid photograph, if possible. You may like to see the photograph before you see your baby.

However, consider seeing and holding your baby and getting to know her as soon as possible. If you have been told that
your son or daughter may not live very long, try to spend as much time as possible with her. Hold her, talk to her, touch her, get to know her and share the time you have together. Take lots of photographs. Some parents like to capture these precious moments on video.

If you have older children, ask them if they would like to see the baby too. They may like to hold her and have their photograph taken with their brother or sister. Other family members may also wish to get involved and support you at this difficult time.

Your baby’s needs

Think of your baby as a baby and not as a syndrome. She is first and foremost your daughter with her own personality, likes and dislikes. Your baby has all the needs of a newborn. She needs food, warmth, a dry nappy etc. Your baby needs _ you and will be comforted by your visits. She may be able to focus on your face, hear your voice, feel your touch. Be positive and become aware of her good points: maybe she has beautiful fingers or toes, lovely hair etc. If you have other children, she may become aware of their presence. If possible, get involved with your baby by feeding and caring for her.

Spiritual support

When your baby is born with either Patau’s Syndrome or Edwards’ Syndrome, the overriding message that comes across from the medical profession is that her condition is
incompatible with life” and that there is “no hope.”

No matter what your religious beliefs are, the hospital chaplain or your local cleric can provide valuable support. Remember, he/she probably knows even less than you do about your baby’s condition, and sees your baby as a new life.

Your baby’s birth may bring on feelings of rejection of God and of your religion. This is a very natural reaction and can be discussed with the chaplain or cleric. He/she should be able to offer you support in journeying with you to a deeper understanding of what has happened. He/she will help you to accept your child for the person she is, and through this acceptance, help you see light and God at the end of the tunnel.