Family response

Feelings at the time of diagnosis

When babies are born with a condition that includes restricted growth, circumstances and reactions can vary greatly. For most parents such a baby will come as a surprise and they are suddenly faced with a wholly new unexpected problem. Parents sometimes recognise that something is physically wrong at the time of birth. Whichever way the diagnosis is made and however sensitively or not it is handled by the medical staff, it is a traumatic event which arouses strong emotions in the parents, their relatives and friends, as well as in those who impart the news.

After you are told about your child’s dwarfism, you may go through a period of shock. It may be difficult to comprehend what is happening and will probably experience a mixture of reactions, including puzzlement, anger, guilt, helplessness and even rejection of the child. You may even deny to yourself that your baby is a dwarf. Later you may experience tremendous anger because you feel so helpless. You also may feel sad and guilty because the perfect child you wanted and expected did not come.

Your sadness may pass quickly, or it may last a while. Talking about feelings can make them less worrying. It can also make painful feelings more manageable. Communication with your partner will be more important now than previously because a child with a specific problem such as dwarfism can strengthen or shatter a relationship. You may wish to work through your disappointment together, or you may want professional help to sort out your feelings during this difficult period.

Discussion with others may help them understand also. Talking enables others to have permission to say how they feel, because if they care about you they will be experiencing a little of what you are feeling. Hiding feelings implies that they are shameful. Sharing feelings, especially the difficult ones, and then accepting them as normal, may help all the family including any affected baby’s older brothers and sisters.

The vital role of parents

Once a parent has worked through their own feelings, their concern will be for the child’s future. The key factor in determining a child’s future will depend on how parents respond to having a dwarf child. The way they handle problems which arise will influence the child’s growth and development in various ways. Their attitude of acceptance is critical for the well-being and adjustment of the growing child. Most of their fears are probably unfounded. A dwarf child’s future is as good as any other child’s and will be built upon childhood successes.

The birth of a child with a restricted growth condition brings a whole array of unexpected problems not previously experienced. It is necessary in this stressful situation that the parents make every effort to accept their child as needing the same love and care as any other child to enable them to cope with an anxious period. This is very important because children learn from the home and family environment.

  • If the parents feel ashamed a child learns to feel guilty.
  • If they practice ridicule a child learns to be shy.
  • If they are tolerant a child will learn patience.
  • If they show encouragement a child will learn confidence.
  • If we are fair a child will learn justice.
  • If children live with approval they learn to accept themselves.
  • If they live with security they learn to have faith.
  • If parents regard a handicap in an objective manner the child will learn to accept its disability and not allow it to interfere with its adjustment.
  • If the parents worry about a handicap the child will learn anxiety but if children live with parents who show acceptnace and friendship they will learn to find love in the world.

Daily and independent living

Do remember that your child is normal, other than in height. Do inform relatives and friends of the child’s disability and emphasise that he/she should be treated as normally as possible the same as other children.

  • Do keep yourself informed about your child’s restricted growth and associated problems.
  • Do join with others who share your problems and can help you to help your child.
  • Do encourage your child to cope with every day tasks – only assist where the child cannot manage.
  • Do answer your child’s questions honestly and truthfully – if you don’t know an answer, offer to find out.
  • Don’t over-protect your child – the child must develop his/her own independence and maturity.
  • Find a doctor in whom you feel confident and stay with him/her.
  • Refrain from putting your child on a lead.
  • Don’t treat your child younger than he/she is – it is belittling and can hinder maturity.

(Source: Information Guide to Persons of Short Stature, edited by Stephen Pinnell, pp. 9-10)

© 2014 SSPA.