At Boston Children's Hospital, we know how difficult a diagnosis of vein of Galen malformation (VOGM) can be, both for your child and for your whole family. That's why our physicians take a compassionate, multidisciplinary team approach to treatment.
From your first visit, you'll work with a team of professionals from intensive care, cardiology, neurology, radiology and neurosurgery who are committed to supporting all of your family's physical and psychosocial needs.
When is treatment performed at Children's?
If a newborn presents with heart failure, treatment can be life saving and must proceed without delay, even within the first few days of life, if necessary. If a newborn has VOGM but is not in heart failure, we try to wait for a few months before scheduling the first intervention to repair the malformation. Any embolization is much safer at age 5 or 6 months, and this age is still early enough to prevent negative impact on brain development.
However, even at 5-6 months, it is often impossible to close a very large lesion in one session, so multiple sessions are usually required. Subsequently, a child's treatment can extend, in staged fasion, until they are 2 or even 3 years old, depending on the complexity of the malformation. The goal at each stage is to allow them to develop normally.
What are the treatment options?
- Embolization: a minimally invasive procedure that has proven to be the most effective treatment option for VOGM.By feeding a narrow catheter through the arteries that lead to the defect, surgeons can introduce materials that block the blood flow through the malformation. The materials used can vary from a kind of fast-acting glue to small particles or coils.
- Embolization is more difficult to perform in a newborn since the size of the catheters is dependent on the size of the blood vessel. A very small child requires very small catheters. Also, the amount of dye, or contrast, that can be injected in any one session, is limited by the weight of the patient, and only a small amount can be injected in newborns.
- Embolization is usually done through the arteries. However, in some cases, the procedure will need to be done through the median vein itself. Treating VOGM trans-venously is usually riskier than treating through the arteries.
It is often impossible to entirely shut down a VOGM in one procedure. However, by gradually closing off remaining areas of blood flow into the VOGM in subsequent stages, endovascular surgeons aim to eventually shut down the malformation entirely or nearly entirely. After successful embolization, it is our hope that patients can go on to full and active lives.
What are the risks involved with surgery?
The procedures, especially when done in the first few days of the baby's life, are very high-risk and carry a risk of death or disability.
However, the prognosis for infants and children with VOGM has improved significantly over the years. This is largely due to improvements in treatment techniques. If VOGM is treated in cases where there is no damage to the brain and organ function is still intact, most children will do very well.
What kind of follow-up care do children with VOGM need?
The type of follow-up care depends on the child's individual circumstances.
For example, if the child was diagnosed with VOGM as a newborn and received prompt treatment, the goal would be to treat the malformation thoroughly enough to help the child leave the Intensive Care Unit (ICU) and require only medical management.
Similarly, if a child is born without heart failure but has a known VOGM, treatment would not begin until approximately age 5 or 6 months. During those 5 or 6 months, the child will be seen by his pediatrician weekly for head circumference measurements. The clinicians here at Children's will get a baseline MRI of the baby's brain, the baby will undergo a head ultrasound every few weeks, and the treatment team will continue to monitor his developmental milestones.
This follow-up treatment can extend until the child is between the ages of 2 and 3 and even beyond, depending on the complexity of the malformation. The goal at each stage is to allow the child to develop normally, because a full and normal life is still possible even if with some continued flow through the malformation. During the time the child is being treated, he or she will continue to have regular MRIs and neurologic exams, as well as ongoing assessments of general level of functioning.
Once it appears that the VOGM has closed, or the treatment team decides that further treatment is not necessary because the flow through the malformation has been significantly reduced, and the risks of continued treatment outweight the benfits, he or she will continue to have regular visits with his pediatrician to assess ongoing development.