Most parents dress their baby girls in headbands for fun. But for Addison Quandt, these accessories, adorned with bows and flowers, weren’t a frivolous fashion statement. Instead, they helped hold in place the gauze that covered a large hemangioma on the back of her neck. “People always said what a fashionable baby she was,” says her mom, Dianne. “If they only knew.”
Addison was born with four hemangiomas, common benign vascular tumors that typically appear as red birthmarks within a week or two of birth. In many cases, they don’t cause problems and clear up without treatment. But not only weren’t Addison’s hemangiomas going away — the one on her neck was growing at an alarming pace.
“It bled a lot,” says Dianne. “And because of where it was located, it was causing her a lot of pain.” When she was three months old, Addison’s pediatrician referred Dianne and her husband, Dennis, to Dr. Denise Adams, co-director of the Vascular Anomalies Center at Boston Children’s Hospital.
A high degree of care
For the next few months, the Quandts kept in close contact with Dr. Adams, who monitored the hemangioma and advised them to keep it moisturized. She also prescribed medications aimed at slowing the growth of blood vessels in the tumor. “We’ve never met a doctor like Dr. Adams before,” says Dianne, who recalls speaking with her on the phone late at night and even during her vacation. “The degree of care she had for Addison made us feel like she was part of our family.”
Yet, despite their best efforts, the hemangioma opened up (ulcerated). Now it was even more unsightly — and worse, more uncomfortable. To stem the bleeding, dermatologist Dr. Marilyn Liang performed laser therapy not once, but twice. Although that procedure solved Addison’s immediate problem, it was clear that she would require more extensive treatment. This past August — a little more than a month before her first birthday — she underwent surgery with Dr. Belinda Dickie to remove it.
An emotional time
Regardless of the reason, the prospect of surgery can be anxiety provoking for any parent. “Addison is just a baby. We were worried about her being under anesthesia,” says Dianne. “I was grateful that it wasn’t it wasn’t a life-threatening condition, but our emotional stress was still very high.”
Addison’s older siblings, Harrison and Sloane, were equally concerned. After learning that she would need surgery to remove what they called her “strawberry,” Harrison, age 4, had an important request for Addison’s care team: “Please take good care of our baby sister.”
‘It was trying to hang on’
When Addison emerged from surgery, Dr. Dickie had news for her parents: First, the procedure had been a success. But the hemangioma had also been infiltrating into the muscles and deeper into the tissue. “She said it had grown ‘fingers,’” says Dianne, referring to the blood vessels that stretched from the tumor, rooting themselves in Addison’s neck. “It was almost like a gremlin — like it was trying hang on by clasping onto her.”
In the hope that others will benefit from their experience, the Quandts have donated the hemangioma to Dr. Adams’s research team, who will study the unusually aggressive tumor. “We’re curious to see what they can learn about it,” Dianne explains. “But we also want to make sure we’re helping other kids and their parents, too.”
Truly a blessing
Now back home, Addison is enjoying life pain free. Like most little siblings, she emulates her older brother and sister, trying to copy them as she smiles and laughs. Unlike them, however, she’s adventurous eater, sampling everything from watermelon to meatballs. “She’s got taste buds like Giada DeLaurentis or Emeril Lagasse,” says Dianne.
Because she still has three hemangiomas, Addison will need to be monitored every 6 months to ensure that they don’t become large and aggressive, too. But her parents say they don’t mind making the trip from their home west of the city. “The amount of attention and care that Addison received at Boston Children’s is unreal,” says Dianne. “It’s truly a blessing.”
Learn about the Vascular Anomalies Center.