What is IVH?
In premature babies, the brain and its blood vessels are still developing. The brain has spaces within it, called ventricles, which are filled with fluid. The new blood vessels near these are very fragile. IVH is when blood from these fragile vessels leaks out into the ventricles (spaces). When severe, the bleeding may damage the area of the brain surrounding the ventricles.
Severe bleeds are more likely to cause long-term problems for your baby. The earlier your baby is born, the higher the risk of IVH happening. Most babies who get IVH are born before 32 weeks.
IVH usually happens in the first few days after birth. It can also happen before or during birth. IVH is much less likely to happen after the first week of life, even if your baby was born prematurely, but it can still happen if your baby becomes unwell again.
What are the causes of IVH?
IVH happens when fragile blood vessels tear because of changes in blood flow through your baby’s brain after birth.
Being born at less than 32 weeks’ gestation increases the risk of IVH, particularly if they have other problems including:
How is IVH diagnosed?
If an IVH happens, this will most likely be diagnosed on the neonatal unit.
In many cases, babies with IVH show no signs that it has happened. It may be found when a doctor does a routine ultrasound scan of your baby’s head. Babies who are born very prematurely have a head ultrasound scan within the first few days to look for bleeding like this.
If your baby does have signs of IVH, these may include:
- being floppy or less active than expected
- being less alert
- having unusual movements or seizures
- swelling of the fontanelles (the ‘soft spots’ on your baby’s head)
- breathing less regularly
When it is diagnosed, IVH is graded one to four, depending on how severe the bleeding is. Grade one is the least serious and grade four is the most serious. Babies who show signs are more likely to have more serious bleeding.
If your baby is found to have IVH, a doctor may do repeat head scans to keep an eye on your baby’s progress.
If your baby had an IVH, they may have a further ultrasound scan or an MRI scan of their head, at around the time of their original due date or their discharge from hospital. This helps doctors know if there has been any lasting damage to your baby’s brain from the bleeding.
What treatment is available for IVH?
There are no specific treatments yet for IVH once it has happened. The blood from the bleeding gradually goes away over several weeks, like a bruise. The doctors and nurses will continue to give your baby all the care they need on the neonatal unit. And the staff there will monitor your baby’s progress to check if the bleeding has caused any problems.
Having skin-to-skin contact and talking to your baby can help reduce harm from an IVH.
We have information about looking after your baby on the neonatal unit, as well as other ways of being involved in care.
What are the potential short and long-term effects of IVH?
An IVH can cause greater risk of problems with development. Less serious bleeding (grades one and two) don’t usually cause serious or long-term problems for your baby. Grades three and four are more serious, with a greater risk of long-lasting effects. Sadly, some babies with severe bleeding will die.
Some babies with IVH can get a build-up of the fluid around the brain during the first few weeks. This can put pressure on their brain and make their head become bigger. This is called hydrocephalus. As well as having head scans, your baby’s head will be measured regularly to look for this. Sometimes an operation is needed to drain the fluid or place a shunt (a type of drain) to help clear it.
An IVH can cause long-term damage to your baby’s brain. Exactly how this might affect your baby will depend on where the damage is.
Some babies with IVH will develop cerebral palsy, which is a condition that affects movement, posture and co-ordination. Some will have learning, speech and behavioural difficulties in early childhood. Some babies will go on to develop epilepsy, which is a condition that causes seizures. These long-term effects can happen with any grade of IVH, but are much more likely after a more serious bleed.
Your baby may have follow up appointments with a specialist nurse or doctor to monitor their brain development for the first two years.
If you have any questions or concerns about any effects of having an IVH, speak to your baby’s healthcare team. You can ask as many times as you like. They are there to help and answer any questions you have.
Knowing that your baby could have long-term problems as a result of their IVH can be frightening and overwhelming, but there is support available. At the bottom of this page we have listed some organisations and sources of support that can help.
Where can I get more help and support?
Having a baby who is unwell with a brain haemorrhage in a neonatal unit can be a stressful experience. You may feel out of control of your situation. Feeling this way is very common. How you feel and process what has happened to you might be different to others who face these challenges. We have some information about how you might be feeling and the different types of support available.
We have included some links to charities and organisations who can provide more support. 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.
- 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.
