Another conversation at the picnic revealed an issue that I don't remember seeing addressed before. After her child with MSUD was born, a mother found a problem developing with her best friend. When this mother spent time sharing with other parents of children with MSUD, her friend felt neglected. Others in our relationships also have to make adjustments and learn how to cope with this new development in our lives.

Since the picnic, I read a related article in the Vol.4, No.2 issue of the RTMDC News, a newsletter from England. I have briefly summarized the article, "Breaking the news to family and friends: Some ideas to help patients," by Helen McConachie a lecturer in Psychology at the Institute of Child Health, Meckleenburgh Square, London.

There is information available on how to break the news of a child's disease and/or disability to parents, but little is written on how to break the news to family and friends. Helen McConachie has drawn from various sources to offer suggestions and observations about breaking the news of a disability. These aptly apply to chronic diseases as well as disabilities. Following is a summary of the article.

Many elements can make sharing the diagnosis difficult. Parents own feelings will be very complex, and it is difficult to talk when you do not know clearly what you feel. Rejection may well be a part of their mixture of feelings. Parents may have been given, or may have taken in, very incomplete information about what is actually wrong with the child and what the future is likely to hold. In one instance, parents were not able to contact a related association until they had help explaining the baby's diagnosis to an older sibling.

Perhaps the hardest element of all for parents is knowing that their family and friends will experience feelings similar to their own; and since they can only just deal with their own feelings, they have no resources left to help others. Relatives and friends are frequently totally at a loss as to what to say, and their remarks can often seem awkward or unsympathetic.

Strategies to use:

  • Be clear. If parents have communicated clearly and concisely with the professionals involved, and have written information to refer to, the task is made easier.
  • Take a positive approach. Professionals should break the news in a way that allows for hope. Parents can then project a more positive approach to others.
  • Discuss what to say. Professionals can help parents plan what to say and the appropriate level of discussion.
  • Involve other parents. Other parents, especially with a similar child a little older, can help find the best words to explain the disability or disease. They can give emotional support when the family feels pressured by others to put on a "coping" face in public, or when close family members are so preoccupied with their own feelings they are less able to listen."
  • Offer support. Professionals should be ready to offer a listening ear and help close family members keep from retreating into loneliness. Since parents cannot be expected, at an early stage, to provide much support for others in their families, setting up groups to meet others in similar situations can be of great help.


When parents are told of a child's disability (or disease), they will need a network of supports. The success of the network depends somewhat on how parents break the news to their family and friends and how they cope with the consequent reactions. Grandparents, in particular, can be a source of strength or anxiety. Professional help should extend to enabling the whole family to function effectively and build up a solid network of social support in the community.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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