What are the long-term effects of HIE?
While some babies with HIE recover fully and have no long-term problems, others may develop difficulties that need help and support from healthcare professionals, such as physiotherapists or speech and language therapists.
If your baby has had cooling treatment, you will meet with your baby’s doctor to talk about your baby’s MRI scan results. They will also talk to you about your baby’s behaviour and progress. This will be used to make a plan for further assessment and follow-up. The amount of appointments your baby will have will depend on their needs.
All babies who have been affected by HIE will need their development monitored closely, particularly during the first 2 years of their life.
When your baby is between 18 months and 2 years old, a healthcare professional will look at your baby’s progress in the following areas of their development:
- Motor (your baby’s ability to move around and hold and grasp objects).
- Sensory (your baby’s sight, touch, taste, smell and hearing).
- Language (your baby’s ability to communicate and understand language).
- Cognition (how your baby learns to think and reason).
This assessment can help to provide a better understanding of how your child is developing and can help to answer any concerns that you may have.
Some babies will develop cerebral palsy, which is a physical condition that affects movement, posture and co-ordination . Some babies may develop problems with their eyesight and hearing, or have learning or behavioural difficulties. Some babies will go on to develop epilepsy, which is a condition that affects the brain and causes seizures.
Knowing that your baby could have long-term problems as a result of their HIE can be frightening and overwhelming at first, but there is support available. At the bottom of this page we have listed some organisations and sources of support that can help.
Sadly, some babies will die of HIE. We have more information about making critical care decisions, palliative care and bereavement, and link to some more sources of support further down this page.
Where can I get more help and support?
Having a baby in intensive or special care can be a stressful experience. Having a baby who is unwell can make you feel out of control of your situation. Some parents feel grief or loss as they lose or let go of hopes and plans they had. Having a baby with HIE is always unexpected.
How you feel and process what has happened to you might be different to others who face these challenges. Feeling this way is very common.
If you are unsure about any part of your baby’s diagnosis, treatment or care, the staff on the unit will help you in any way they can. It is okay to ask again if you need information repeated or made clearer. The team will understand and want to support you.
We have included some links to charities and organisations who can provide more support. Social media websites such as Facebook may also be able to provide information about local support groups and charities where you can talk to other parents who have a baby with HIE. Your unit may also be able to provide you with this information. If you need someone to talk to, you can also contact us on hello@bliss.org.uk or arrange a video call with one of our volunteers.
- Peeps HIE charity – Provides support to parents affected by HIE, and raises awareness.
- Hope for HIE - Works to improve the quality of life for children and families affected by HIE through useful resources and support.
- The Birth Trauma Association – Provides support to women who have had a traumatic birth experience.
- The Rainbow Trust – Provides emotional and practical support to families who have a child with a life-threatening or terminal illness.
- Sands - A charity that supports anyone affected by the death of a baby.
- Scope - A charity that supports disabled people and their families through practical information and support, particularly at the time of diagnosis.
- Together for Short Lives – A charity for children with life-threatening and life-limiting conditions.
- Epilepsy Action – Provides advice and support to anyone affected by epilepsy.