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There are many ways you can help children and their families get the care they need.
Undoubtedly, you were distressed when you learned that your child has a venous malformation (VM). That's understandable — there is no known cure for VMs and they can sometimes be complicated to treat. However, you're in the right place.
The specialists at the Vascular Anomalies Center at Boston Children's Hospital have treated many kids with VMs, so we understand more about how these malformations respond to therapy — which means that your child will be cared for by some of the world's most experienced physicians.
In some kids, a VM doesn't result in any health problems, so we only recommend treating your child's VM if the malformation is doing any of the following:
What kind of treatments are there?
Treatments fall into several categories, which we've outlined below.
compression garments — If your child has a VM on his arm or leg, your doctor may recommend that he wear these tight-fitting pieces of clothing on the affected limb to reduce pain and swelling.
anticoagulant therapy — One of the potential risks of a large VM is that a blood clot formed in the abnormal blood vessels will cause pain. Your doctor may recommend that your child take a daily dose of an anticoagulant (blood-thinning) medication to help prevent clots from forming.
Sclerotherapy — Sclerotherapy is our first choice of therapy. It's safe and effective in 75 to 90 percent of kids with VMs.
Although sclerotherapy reduces the size of the lesion and improves symptoms, your child's VM will not go away—and, in fact, the lesion can re-expand after sclerotherapy, which means that your child may have to have additional treatments.
It's also possible that your child will have a visible deformity after treatment —if that's the case, an operation may improve the deformity.
resection — This is a procedure where a surgeon removes part or all of your child's lesion. It's rarely our first choice of treatment for several reasons:
Your doctor may consider resection if:
And keep in mind that — just as with sclerotherapy — VMs can re-expand after surgery, which might require your child to undergo additional operations.
What kind of support will we get?
At Children's we consider you and your child integral parts of the care team and not simply recipients of care. Your care team will be with you every step of the way to ensure that you and your child are getting the support you need.
We want to maximize the safety and effectiveness of whatever therapy you and your child's doctor decide upon. We do everything we can to prevent and treat clotting, pain and side effects of treatment to keep your child as comfortable as possible while we're working to manage the VM.
Your child's physician and other members of your care team will also work with you to set up a schedule of follow-up visits.
Children with VMs sometimes need multidisciplinary care. Some specialists your doctor may recommend for your child include the following:
Depending on your child's symptoms and the progression of the disease, we may also bring in the following specialists.
We understand that you may have a lot of questions when your child is diagnosed with a venous malformation. How will it affect my child long term? What do we do next? We've tried to provide some answers to those questions in the following pages, but there are also a number of other resources to help you and your family through this difficult time.
Patient education: From the first office visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have — What kinds of treatment are available? What do we do about the pain? They will also reach out to you by phone, continuing the care and support you received while at Children's.
Parent to parent: Want to talk with someone whose child has been treated for a VM? We may be able to put you in touch with other families who can share their experience.
Faith-based support: If you are in need of spiritual support, we will help connect you with the Boston Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.
Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
On our For Patients and Families site, you can read all you need to know about:
There's help available online, too:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”