Is there anything else you’d like the families to know?
It’s important to get advice from people who see a lot of these patients. We get a lot of second or seventh opinion consults where we provide a different diagnosis or treatment plan. Sometimes care can be given locally, even if their physicians are experts in vascular anomalies. We provide education to referring physicians in hopes that they can become comfortable providing some of the care locally. We try to minimize recommendations to come to Boston, unless we feel that we either need to physically examine a patient to make a diagnosis or that we have particular expertise in management. The vast majority of patients we see are rare enough that our experience is valuable. As an overarching medical comment, for things that are significant and/or don’t make sense, it’s always worth another opinion. Some people are really shy about asking for another opinion, not wanting to offend a doctor or wanting to avoid the trouble. Many patients coming for second opinions have recognized that it’s too important to not get expert advice. We have significant challenges with families that we wish we had seen earlier and with families whose expectations are far apart from ours when they walked in.
Cameron Trenor, MD
I would say it’s very important to educate yourself but in an informed way, to get a very specific diagnosis and then seek out treatment at a place that sees a lot of whatever it is that you’re dealing with. That would be the single piece of advice I would say. There’s the rare family where they don’t want to know so much, they just want the doctor to tell them what to do, but I sort of feel uncomfortable with that, and I think it’s very important for the families and ultimately the children too, to understand what’s going on so they can get the best possible advice.
Darren Orbach, MD, PhD
MBS: I want them to know that we have a wonderful group of specialists, nurse practitioners, a social worker, and administrative people in our office who understand this field of rare anomalies. We almost believe that everybody has a vascular anomaly because we see people every day with these anomalies. Truthfully, for many patients who have a vascular anomaly, they’ll never meet another person who has one. Their pediatrician may never see another patient who has one. I think it’s important for the families to know that this is a good place to ask questions and be seen for evaluation and advice and treatment because we understand vascular anomalies. It is important that they know we are a good resource. Whether they choose to come and see us or just want to talk on the phone or communicate via email, we are willing to help. If they live far away we may be able to suggest specialists closer to them who have experience with vascular anomalies who might help them without the need to travel so far.
ES: The dedication of our team is paramount. Each patient truly is a teacher guiding us in best serving this unique population. From the lab right to the OR, people every day are really dedicated to learning more about these anomalies and how to best treat them across the lifespan.
Erin Spera, MS, CPNP and Mary Beth Sylvia, MS, FNP-BC
I think it’s really important to know that it’s a treatable disease. While most vascular anomalies are chronic diseases, they can be treated and they can be controlled. Despite the information you may get from providers on the outside, there are minimally invasive options to treat this. The expertise and the experience are here, both with very invasive as well as minimally invasive options, and medical options. For a patient that’s got a particular vascular anomaly, I always say call the Vascular Anomalies Clinic and we’ll usually get you pointed in the right direction.
Horacio Padua, MD
This really sounds saccharine, but value the child as a child and don’t focus on the deformity or the problem. Accentuate the strengths for the child and run with that. I guess that would be number one. Number two is really ask all the questions that you have; don’t hold back, you’re entitled to ask questions. Three, be very careful about identifying your child as being special because that often can backfire in a bad way. And then the fourth one is to reconcile differences between mothers and fathers about what they see, even if that requires meeting with the surgeon or meeting with someone else to resolve those issues because the children pick up on that, and that can be the most difficult and the most lasting consequence from dealing with any deformity. The nevus can go away, the child can gain function, but the conflict between the parents is what the child remembers more than anything else.
Myron L. Belfer, MD