Vascular Anomalies Center Helps Heal Patients and Family with Compassionate Approach
When a baby is born with a birthmark, pediatricians often use a “wait and see” approach. Often the mark will fade as the baby gets older. But for a small percentage of babies, their red, pink or purple colored blemish might be something more serious. Thankfully, an interdisciplinary team of specialists at the Vascular Anomalies Center at Children’s Hospital Colorado can provide families with the right diagnosis, a proper treatment plan and peace of mind. (Pictured left to right: Annie Kulungowski, MD, Anna (Panny) Cowan and Taizo Nakano, MD)
Birthmarks: benign discoloration or life-threatening malignancy?
Birthmarks typically fall into one of two categories: tan or brown colored marks caused by a cluster of pigment cells, or red, pink or purple colored blemishes caused by abnormal blood vessels under the skin. The latter type is a vascular anomaly – a vessel abnormality that can affect the capillaries, veins, arteries and lymphatics and present as either a tumor or a malformation.
In less serious cases, the birthmark gradually goes away as the baby grows. But in other cases, what may initially appear as a faint stain on a baby’s face could grow over the course of weeks and cause scarring or vision loss. Some babies are born with a Kaposi form hemangioendothelioma, which at birth appears as a bruise-like birthmark on the trunk, extremities, head or neck. Over time, this can grow into a tumor that affects the soft tissues and may also permeate the skin to the bone, putting the baby at risk for low platelets and stroke. Some highly aggressive forms increase the risk of mortality if not treated by chemotherapy.
Annie Kulungowski, MD, pediatric surgeon and co-director of the Vascular Anomalies Center, explained that most patients are referred to the center with a diagnosis of ‘hemangioma.’ It is a common type of birthmark, also known as a strawberry mark, which presents as a raised mark on the skin.
“Although hemangioma is the most common referring diagnosis, not all birthmarks are hemangiomas,” she said. “It may look like one, but sometimes there is a lot more than meets the eye. Establishing the proper diagnosis is so important because these malformed vessels can continue to expand with time, taking over an extremity or even filling the entire abdomen.”
One appointment, six specialties
These serious cases require treatment from the center’s interdisciplinary team of physicians, which includes specialists from pediatric surgery, hematology, plastic surgery, interventional radiology, otolaryngology and dermatology.
Families are able to schedule a single appointment for their child and have consultation with all the represented medical and surgical specialties. Together the team evaluates the patient and reviews studies and imaging to establish an accurate diagnosis.
According to Dr. Kulungowski, many of the families seen in the clinic have already traveled the country trying to find a doctor who can help their child. “Our families come into the clinic without a clear diagnosis—or sometimes many different diagnoses,” she explained. “They are worried and scared.”
Taizo Nakano, MD, pediatric oncologist hematologist and medical director of the Vascular Malformation and Tumor Center, said that it is critical that families feel they are entering a relationship with a community of physicians. “It is important that they have easy access to communicate with the team at all times,” he said. “As providers we need to not only show up, but demonstrate we can put into motion an efficient and safe treatment plan.”
Drs. Nakano, Kulungowski and the team started the center to provide compassionate care to families who are at a very difficult juncture in their lives. They made sure to structure their approach to always put the family at the center of all they do.
“Our goal is to understand what’s going on with our patients and their families and be available to answer the questions that they need answered,” Dr. Nakano said. “That takes time to meet as a group, to listen to patient concerns and to work through the sometimes difficult answers.”
Reducing a family’s burden
From the moment a family receives a referral, the clinic’s providers and staff work diligently to remove every obstacle they can. Much of this work rests with clinic coordinator Anna (Panny) Cowan. She tracks down the patient record, including copies of all imaging studies, evaluations and procedures. Cowan also helps with insurance issues, FMLA paperwork and scheduling appointments to minimize families’ time away from work.
This is something that comes as a huge relief to families. “We receive a lot of ‘thank yous’ from families for all the coordination we do on their behalf,” said Cowan. “They are coming in to see a large team of providers, so it’s the best use of everyone’s time when the team has all the information needed to start making recommendations.”
But aside from their success in solving the logistic and administrative hurdles associated with treating these patients, the team also excels in their compassion for families’ situations.
“Our providers really go above and beyond,” Cowan said. “I see them calling families after hours and weekends, including going out of their way to see families on days we don’t have clinic or coming into the hospital on a day they weren’t scheduled.”
For Dr. Kulungowski, giving families the right diagnosis is the most gratifying part of her job.
“Being able to tell a family 1) we know what your child has, and 2) we know ways to help brings them a lot of peace. From medications to surgery, there are a lot of options. It’s healing the patient, but also healing the family, and leaving a sense of hope that everyone is going to get better,” she said.
The team is proud of the impact they have already made, seeing approximately 350 patients last year, and plan to keep compassion a central tenet of their practice.
“For the providers on our team, compassionate care is the reason we started the Vascular Anomalies Center. It remains the spirit that keeps us together and allows us to achieve such great outcomes,” Dr. Takano said.