Vascular Malformation: Anthony’s Story
Meet Anthony
For 12 years and two days, Anthony and his family waited for an effective treatment for the vascular malformation on his face, which affected his appearance and ability to eat since birth. In November of 2024, just after his 12th birthday, their hopes were realized: A Children’s Mercy Kansas City team used an innovative procedure to remove as much of the affected area as possible.
“The moment Anthony was born, his mouth was purple, and he had purple markings along the right side of his face,” said Heather, Anthony’s mom. “His doctor thought it was bruising from birth, but it didn’t go away.” Eventually, the discolored and swollen area was diagnosed as a venous malformation: An area of the body where the veins are malformed into tangles and dilated spaces.
Getting to the bottom of the blue spot
Venous malformations are usually present at birth. While they are typically not life-threatening, the distended venous channels can be painful and unsightly. They are notoriously difficult to treat because they are often so entwined with the surrounding blood vessels, nerves and bones.
In Anthony’s case, the venous malformation caused a bluish spot about the size of a marble on his lip and difficulties with eating and swallowing throughout his childhood. His pediatrician helped the family find ways to adapt, like cutting food into very small bites, but they were not able to treat the condition itself locally.
After several years of consulting with their pediatrician and a dermatologist near their home in southeast Kansas, the family wanted to go beyond the “wait and see” approach they’d taken so far. When Anthony was 9 years old, their dermatologist referred them to Children’s Mercy for additional insight.
Experts assemble for Anthony
The family’s first appointment with Children’s Mercy was with pediatric dermatologist Amy Nopper, MD, Director, Division of Dermatology, who founded and has overseen our Vascular Anomalies Specialty Clinic (VASC) since 2010. This multidisciplinary clinic serves patients with complex vascular malformations who often require treatment from multiple subspecialists.
The VASC team includes experts in interventional radiology, ear/nose/throat surgery, plastic surgery, and hematology/oncology. Gathering this team of specialists together in one clinic allows for a more efficient patient experience as well as providing multiple perspectives and options for treating these challenging lesions.
“I think that the multidisciplinary approach to more complex vascular malformations is extremely important in achieving accurate diagnoses, as well as working together with the patient and family to determine the best treatment plan for that individual child and their unique condition,” said Dr. Nopper.
"It also allows the specialists to learn from each other's experiences and provides continuity of care and a medical home for the management of these often rare and complex conditions.”
Anthony’s VASC team ordered an MRI and learned that his venous malformation involved his tonsils, throat, tongue and lips — that explained his difficulty with eating and swallowing over the years. But the part that bothered Anthony the most was the swollen, blue area on his lip that impacted his appearance and confidence.
“As he’s gotten older, kids were bullying him and school was really hard,” said Heather. “That was when we reached out for the referral to Children’s Mercy.”
“We give families all the options, from observation to medical therapy to surgery to combined procedures,” said Jake Dahl, MD, PhD, MBA, Otolaryngology – Head and Neck Surgery. “We give them the benefits and risks of each option. The coordination is seamless on the back end, so families come in, and everything is taken care of for them.”
Moving ahead with treatment
As the VASC team discussed Anthony’s case, they agreed that there were a few initial options for treating his malformation:
- Sclerotherapy – injecting a medication directly into the affected area to shrink or stop blood flow to those veins. It often takes several rounds of treatment over several months to be effective.
- Medication – taking daily medications that require regular bloodwork to ensure safety and effectiveness.
- Observation – continue to wait and see how the malformation affected Anthony.
After another year of observation and lots of careful thought, the family decided to move ahead with treatment. Anthony was still dealing with bullying at school because of his facial differences, and he was ready to try anything to help his condition improve.
“It’s been a long process,” Anthony shared. “I didn’t really think much of it [when I was younger], but when I came to middle school, kids started to make fun of me, and I couldn’t really deal with it. At that time, I didn’t really have any friends because of my lip, until we started coming to Children’s Mercy.”
First, Anthony tried the medication route. They quickly discovered that he was highly allergic to the medication, so that option was out.
Next up: sclerotherapy. This treatment caused a lot of swelling in Anthony’s face, but didn’t help his facial appearance and function much after the swelling subsided. Another disappointing strikeout.
But hope was on the horizon. At their follow-up appointment after the sclerotherapy, the family met with Dr. Dahl, who had recently joined the Children’s Mercy team. Dr. Dahl thought Anthony would be a great candidate for a new type of procedure that combines interventional radiology and surgery and has only been done at a handful of institutions so far: Glue embolization of the venous malformation, followed by surgical resection and reconstruction.
Success at last
Dr. Dahl partnered with Brenton Reading, MD, Division Director, Interventional Radiology, and the other members of Anthony’s VASC team to come up with a plan. They would inject a special type of glue mixed with radiopaque contrast into the affected area so that the team can see exactly where the injected glue is going. Once the glue fills the malformation and hardens, the surgeon can remove that area completely, without significantly affecting the healthy tissue around it.
This approach was a home run for multi-sport athlete Anthony. “Everything went great!” said Dr. Dahl. After Anthony healed from the procedure, “the family was just beside themselves with how much better it looked, and Anthony was feeling better about his appearance and how others perceived him. They are thrilled with the outcome.”
At school and on the playing field, “his confidence has skyrocketed since he’s had his surgery,” Heather said. Anthony’s dad, Cameron, added, “There are not enough kind words in the dictionary to describe Children’s Mercy.”
From a medical perspective, the VASC team is proud to be bringing this innovative procedure to kids in the Midwest. “It’s really exciting from a collegial perspective,” said Dr. Reading. “We all put our heads together to come up with a plan. We have so much collaboration, teamwork and respect among the different disciplines here.”
Dr. Nopper agreed: “This is an exciting time for the specialty of vascular anomalies. It is really gratifying to see the results of the combined procedures of Drs. Dahl and Reading, and the impact that this is having on Anthony and his family.”
Patience pays off
Heather and Cameron followed Anthony’s lead throughout the whole process, and they’re glad they did. “Don’t give up!” Heather advised other parents of kids with vascular conditions. “Keep checking back and listening to what your kid says. If it’s something that doesn’t bother them a lot, let that be their decision, but if it’s affecting their behavior and mental health, get them the help they need. We got really lucky — there was nothing available when he was a baby, and now they were able to help. We are so thankful we crossed paths with the VASC team at Children’s Mercy.”
And Anthony has a message for other kids: “Just because someone has something different about them doesn’t mean they aren’t human. I thought I wasn’t normal because I had the thing on my lip, but just because you have something doesn’t mean you’re not normal.”