Congenital Deafblindness

Upon Diagnosis

Premature baby sleeping in ICU only one day oldWhen and how you come to learn of your child’s difficulty with hearing and seeing will be different for everyone. Some may know before the baby is born as they know the baby has a condition or syndrome that may result in deafblindness. Some may be told in the few weeks after birth that hearing and vision impairment is suspected which may be then confirmed once further testing has taken place, some will learn about it as the child grows and develops differently. The hearing impairment and vision impairment may not be diagnosed at the same time, sometimes years apart.  Rarely are hearing and vision only affected. It is more likely that they, along with other body parts and functions are also affected.  Testing of heart, lungs, brain, blood, immune and digestive systems, muscles and movement may be carried out before vision and hearing are considered. Your doctors will decide when and how this can be done. You can ask them if and when your child’s hearing and vision will be tested.

Many children who have deafblindness start out with a lengthy stay in hospital, but once medically stable, they leave hospital to go home for the first time. Returns to the hospital to see a paediatrician, specialist doctors, and a range of people monitoring the health and development of your child are likely to be frequent. Understanding the job of each of these people and why you have appointments with them can be overwhelming. See the A-Z of Medical and Therapy Jargon to look up names and words that you are not familiar with.

Observation of your child, and interacting with them, will tell you a lot about how their senses and bodies are working. This watching, holding and interacting with your child may not be as simple as it seems because of  their specialised health and medical needs, so don’t be afraid to ask your doctors, nurses and allied health team for guidance with this. The section on  Learning and Communicating  will tell you more about this too.

Following a new diagnosis, family members may go through a range of emotions, thoughts and reactions which are natural. These may include feeling shock, being upset, questioning how it happened, “will things be alright?”, “what should I be doing?” and many more. It is during this time that you need to be sure to communicate with the medical and allied health teams around you, who are supporting you and your family. Be sure to ask them questions and seek clarification. They are there to provide you with advice and choices that you have in developing and enhancing your child’s health, growth and learning. Some of this information may take some time to think through and to think of how it will work for your family situation. As time moves on you are likely to find that you will develop some wonderful relationships with professionals that you work with who will be able to help you and your child master new skills and they may well inspire you.

Many families go through a period of grief while they are processing information which has been shared with them and while they consider how this will impact their family members including siblings. You may wish to access services of other organisations or agencies that may be able to support you with grief specifically. Professionals around you can provide you with details of these types of supports which you may wish to consider. This is a link to a mother’s thoughts she has put into a story. It is quite well known, but if this is your first experience of a child born with a disability, then you may not have read it. By Emily Perl Kingsley, it’s called   Welcome to Holland

Tell us about when your child or someone you know was diagnosed deaf and blind. Tell us Your Story