Hemangioma Awareness Month Campaign in Honor of Reagan!
When our beautiful daughter, Reagan Leigh, was born on August 9, 2016, we almost immediately noticed part of her scalp was a different color – a dull blue/purple. Doctors were sure it was bruising secondary to delivery, so we thought nothing more of it. A week later, a hospitalist pediatrician thought it was a Port Wine stain and referred us to a Pediatric Dermatologist. Did you know there are only 226 Pediatric Dermatologists in the entire country?! Thankfully, two of those are right here in Richmond, Virginia. We were able to get a same-day appointment. She also thought it was a Port Wine stain with perhaps a mole in the back.
When Reagan was 3 weeks old, she went for a routine well-baby checkup. Her birthmark had already begun to change, and the pediatrician told us it was in fact a strawberry hemangioma, which is a common type of vascular tumor. Most of these vascular birthmarks are small; less than the size of a pencil eraser, and disappear by age 5-7 years old. Reagan’s covers about 1/5th of her scalp and part of her right ear. Reagan’s pediatrician warned us it would change quickly and to definitely make our follow-up appointment with Dr. Vernon, our Pediatric Dermatologist.
2 weeks later, at that follow-up appointment, Dr. Vernon confirmed the diagnosis of strawberry hemangioma. Because Reagan’s hemangioma is large and spotty, often an indicator of other concerns, she needed to quickly have an MRI/MRA under general anesthesia to check if there was any other blood vessel or brain involvement. There is one medication that is known to help hemangiomas – a beta blocker that commonly treats high blood pressure has shown success in keeping these birthmarks from growing. Otherwise, the tumors usually grow enormously until 9-18 months old before starting to “involute”, or go away. Unfortunately, there is a risk during this growth phase of the skin being stretched so thin that it ulcerates – creates open wounds. The mole that we thought we saw when she was only a baby? Actually, it was the very beginning of an ulceration. But because the drug is a high powered heart medication, she also need a Pediatric Cardiologist consult, Echo, and EKG before taking it.
We had to wait a month for all that testing. In the meantime, Reagan got 4 different topical creams on her hemangioma to try to stall growth as much as possible. She developed 2 ulcerations; one of them large and very painful for her. She was prescribed Lidocaine cream to try to help with pain, started taking daily Motrin and Tylenol at less than 2 months old, and her wounds were covered with bandages that needed to be changed daily – at $5 per bandage.
Thankfully, blessedly, the MRI/MRA cleared Reagan of any brain abnormality or deep blood vessel issues. Her cardiology testing came back clean, as well.
Reagan started her medication 2 days after her MRI results came in. She has had no complications or side effects. Her wounds healed and are now just scars. Her hemangioma is now totally flat and beginning to involute. Good news of healing started to come at our dermatology appointments, rather than news of more testing, ongoing pain, and the heartache of not knowing what would come next. We are now on cruise control on our hemangioma journey. One day, this will all just be a memory and a testimony to a strong little girl.
Looking back at insurance documents, we realized that Reagan’s hemangioma has cost over $16,000 in medical testing and appointments. Our out of pocket costs in copays, medications, bandages, and etcetera is well over $1,500. In order to give the complicated medication as instructed, I had to become a stay at home mother. We consider ourselves enormously fortunate that we have good insurance, the ability to pay, and easy access to doctors and quick medical care. This is not something we take for granted. Hemangiomas are still widely misunderstood and training for them is sparse. Very quick and early specialty medical intervention is required to prevent hemangiomas like Reagan’s from developing potentially lifelong or debilitating complications. I am supporting the Vascular Birthmark Foundation because they want to provide treatment to every child suffering from a vascular birthmark. Vascular centers are rare – Dr. Vernon explained to us early on that we may need to seek treatment in Cleveland at a specialty clinic. We consulted with two physicians in New York City. Children in other parts of the world do not have this easy access to treatment, specialty centers within reach, or even general pediatricians trained in beta blocker therapy.
May is Hemangioma Awareness month. We are starting this fundraiser honoring Reagan – the bright, playful little fighter who rarely ever fussed, even when her pain was evident. I want all children to have access to the same care that she had. Everything raised as part of my campaign is earmarked for the Vascular Birthmark Foundation iTEAM – teams that will go and train physicians in other countries while offering free treatment to children in locations that would not otherwise find their way into a treatment pathway.