Mary Beth Sylvia: I’m Mary Beth Sylvia, I’m a family nurse practitioner and one of two nurse practitioners who work exclusively in the Vascular Anomalies Center with patients who have vascular anomalies.
Erin Spera: My name is Erin Spera. I am a pediatric nurse practitioner who also works with vascular anomalies patients and their families.
How did you get interested in this pediatric population?
MBS: There was no education at all about vascular anomalies during my training as a nurse and as a nurse practitioner. I started at Children’s 8 years ago in a position in interventional radiology working mostly with the patients with vascular anomalies who underwent treatment in interventional radiology. It was a learning process from the very beginning. I was there two years and then a position opened in the Vascular Anomalies Center and I transitioned over here.
ES: I was initially a staff nurse in the newborn intensive care unit (NICU) here. I completed my graduate nurse practitioner studies in 2006. I loved working at Boston Children’s and sought out a position that allowed me to continue working here. A position opened in the vascular anomalies center. I was interested to learn about an exciting new field and also to participate in outpatient care, so I applied and received the position. I started working here in August of 2006.
[Later]
MBS: I took care of a few babies with hemangiomas* when I worked in primary care, but other than hemangiomas*, I wasn’t familiar with any other vascular anomalies diagnoses.
ES: I had a similar experience, I had taken care of a few babies in the NICU that had ulcerated hemangiomas*. Overall my knowledge of vascular anomalies was very limited.
What are some of the rewards of working with this population?
MBS: I think it’s very rewarding to be able to finally explain to somebody what they have as we understand it – to provide what we think is an accurate diagnosis. Some of our physicians have been looking at vascular anomalies for many years, and have a good understanding of what the diagnoses are and what they mean and can provide greatly needed information. It helps people who might say that no one ever explained to them exactly what they have so they really understand what it means. It is also very rewarding to make people’s lives better, either by some of the things that they can easily do, such as compression garments*, and taking care of them after they’ve gone through procedures that have made a really big difference in the way they look and feel.
ES: It is very rewarding to be able to help patients who otherwise have been told their diagnosis was not clear or that no treatment could be provided. Educating patients on the diagnosis alone can be very empowering. It is very gratifying for our team to offer patients treatments that greatly impact their pain levels and function.
What are some of the challenges of working with this population?
ES: The referrals are getting more complex. Trying to find the balance of the best way to review patients, or see patients in clinic and to make sure we are being thorough, is sometimes quite difficult. It is also challenging for some patients to understand the wait times and the process for clinics and conference. Often patients seek our help as a second or third consultation. There is solace in knowing that we are a specialty center but it is difficult for families to hear that they have to wait for our help due to the high patient referral volume.