HEDI - Babies With Disability or Chronic Illness

A child's disability or chronic illness is often detected during medical check-ups. Sometimes this happens shortly after birth. If you find yourself in this situation, then the ideas you have about your future family life have probably been thrown off. This can be very unsettling. Suddenly your child is ‘different’ than the others. They may not learn as much or as quickly as other children of the same age. Maybe they will need aids to be mobile or will need general care. If they suffer from a chronic disease, then lifelong treatment with medication is most likely necessary. And as a mother, you are faced with great tasks. First, take your time to absorb the new information. Then you can gradually clarify the many questions that now arise.

Connect with others

You should absolutely allow others to help you cope with the new situation. Talk to people close to you and whom you trust. Talking about your fears and worries with your partner, family members or close friends can help take some pressure off of you. Feeling compassion and support from loved ones can help you regain confidence. Connecting with other parents of children with disabilities or chronic illnesses is also a good way to get advice and support. There are many active self-help organisations for people to support each other. You can share your experiences in such groups and exchange problem-solving advice. Get in touch with relevant self-help organisations and use the opportunity to ask all the questions you have.

Take advantage of advice centres and government programmes!

You can also get in touch with associations for those affected by the same condition as your child as well as seek independent advice from public counselling centres. There you can find answers to your questions about related psychological, social and legal issues. Maybe you're not sure you want to continue with the pregnancy. In this case, it is advisable to discuss your fears and anxieties at pregnancy conflict counselling. The organisations that offer this counselling are supported by well-informed staff who can tell you what kinds of support a child with a disability or chronic illness is legally entitled to. This includes funds, but also resources such as hearing aids or wheelchairs. If needed later on, you can also apply for assistance to help your child through their schooling or studies. All these services are part of what’s known as ‘integration assistance’ in Germany. This is intended to help your child develop as independently as possible and to lead a largely self-determined life. You can already find support during pregnancy from a family midwife or family paediatric nurse from the Early Help Network (Netzwerk Frühe Hilfen). They can also answer your questions and give you tips on what other facilities and counselling centres can help you.

Babies With Disability or Chronic Illness

Connect with others

Take advantage of advice centres and government programmes!

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