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Diffuse midline gliomas are the second most common type of primary high grade brain tumour in children.
As we learn more about the genetics of brain tumours, some have been reclassified and renamed. That's why DIPGs (diffuse intrinsic pontine glioma) have recently been renamed diffuse midline gliomas.
You may also hear these tumours referred to as diffuse midline glioma, H3.3 K27M-mutant. The second part of this just refers to the particular mutation or change in the particular gene.
The name diffuse midline glioma describes the main characteristics of this type of brain tumour.
Diffuse means that the edges of the tumour spread into surrounding healthy cells, so they don’t have well-defined borders. This makes the tumour extremely difficult to remove surgically without damaging the surrounding healthy brain tissue.
Midline means that the tumour grows in structures lying on the midline of the brain. The midline is the natural centre line of the brain between its two halves
Glioma is a general term used to describe all tumours which arise from glial cells. Glial cells surround, support and protect the neurons (nerve cells) in our brain and spinal cord.
Diffuse midline gliomas are more common in children, but they can occur in adults. They're grade four tumours, which means they tend to grow quickly, are more likely to spread and are sometimes called malignant or cancerous.
They're usually a rare form of astrocytoma and most commonly grow in the pons in region of the brain stem, the thalamus and the spinal cord. Occasionally they grow in the cerebellum.
The pons is an area deep within the lower part of the brain, where the brain stem and many of the body’s nerves from the spinal cord (known as cranial nerves) connect directly to the brain. It controls a number of critical bodily functions, including breathing, sleeping and swallowing.
Due to the importance of these functions and structures, pressure caused by a diffuse midline glioma in this area can be very serious.
The signs and symptoms of a diffuse midline glioma (previously called DIPG) can vary, can vary as the pons and surrounding structures are responsible for a variety of different body functions.
The most common effects your child may experience include:
Growth of a diffuse midline glioma might also block the drainage of the cerebrospinal fluid that surrounds and nourishes the brain. This can cause a build-up of pressure in the head, known as hydrocephalus.
Hydrocephalus, which is also very common in other types of brain tumours, can cause effects like:
It’s important to remember that not all cases of diffuse midline glioma (previously called DIPG) are identical and your child might show any combination of these symptoms.
To help with the physical effects, your child’s healthcare team will provide various treatments or referrals.
For example, if your child has trouble when swallowing or chewing, they may refer them to a speech and language therapist who can help. They may also suggest changes in your child’s diet that would make eating easier, or using a nasogastric (NG) tube. This is a tube that is passed through the nose to the stomach, through which food and medicines can be given.
For sight problems, they will refer your child to an eye specialist, called an ophthalmologist. They can use exercises or aids to help your child.
If your child develops hydrocephalus, caused by a build-up of cerebrospinal fluid, they may need to have a shunt fitted.
Receiving any diagnosis of a brain tumour can be devastating and it can be very difficult to come to terms with what you have been told regarding your child’s prognosis. We’re here to help.
Our free Information and Support Line offers a way to ask questions or raise concerns about anything concerning a brain tumour diagnosis and how you can support a loved one. You can call our team Monday to Friday, on 0808 800 0004, or email email@example.com and we‘ll aim to respond to you as soon as possible.
It’s available to anyone affected by a diffuse midline glioma diagnosis – person with the brain tumour, family or friends. Specifically for parents, our central team can connect you with our dedicated Children and Families Service.
There’s also our very supportive online community in our closed Facebook group for parents, where you may be able to talk to somebody whose child has also received a diffuse midline glioma diagnosis:
The cause of brain tumours, including diffuse midline gliobmas, is not yet known. This can be one of the most difficult things to accept as a parent as it can leave you feeling helpless.
Brain tumours are nobody's fault though. There is no research that shows that anything you may have done during pregnancy or in your child's early infancy could have caused your child's brain tumour.
At the moment, there’s ongoing research into diffuse midline gliomas, including discovering its causes, which could help develop new treatments in the future.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
Phone lines open Mon-Fri, 09:00-17:00
You can also join our active online community on Facebook - find out more about our groups.