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We are so sorry your child has been diagnosed with this condition. Please join our VOGM Facebook group to connect with over 1500 VOGM parents from around the world. There you will find lots of info and support at your disposal. We know this diagnosis is hard bc we have been there and are here to help and support you.
Most Vein of Galen malformation (VOGM) children will need treatment to survive and reach their full potential. If you are receiving treatment in a country with centralized medicine, like the United Kingdom, you will be funneled to a specialist by your healthcare system. This will not solve all of your problems or answer all of your questions, but it will keep you from worrying about picking the correct treatment provider. If you live in a country without centralized medicine (like the US), please take the time to do your research before choosing the best specialist for your child. Please don't be afraid to get a second or third opinion from a specialist even if you have been under the care of a specialist for an extended period of time. Choosing the right doctor can be a life-saving decision.
If your child needs intervention in the first weeks of life, speak to your doctors about placing additional umbilical arterial (UA) lines. This needs to be done soon after birth. Having multiple UA lines can give your doctor a better chance of successfully accessing the VOGM.
If your child does not need treatment in the first few weeks of life, treatment is frequently required by approximately four months. We have been told this is caused by a change in the flow of cerebrospinal fluid at this stage of development.
Beyond the suggestions above, it is almost impossible to provide general statements about treatment. Every child is different, and every VOGM is different. For more specific questions, please reach out to the families in the Facebook groups. They can empathize with your pain, and they want to help.
For the families who have lost a child, we are also here for you. Not every VOGM story is a success story, but every VOGM child is valued whether or not they have left us. You are not alone.