Tell Your Story
Share Your Story and Raise Awareness
How did you become involved with VBF? Why do you feel it’s important to raise awareness for vascular birthmarks and the related syndromes? Please share your story with us. Please share your photos and story with VBF at our contact page
Chloe Simone Grant 1/12/2008: Coming home from the hospital
My fourth child, Chloe Simone arrived in the world on January 10th, 2008. My first two pregnancies resulted in (healthy) pre-term boys. My third pregnancy was blissfully uneventful, until the evening after Avery was born. The following week was harrowing. She was diagnosed with an aortic valve defect and had what the neonatologists describe as unilateral seizures. Long story short, she is a healthy, beautiful three year old today.
Shortly before Avery's first birthday we received the best surprise of our lives. I was pregnant! Doctors had implied that I would not be able to conceive on my own.
Chloe was my biggest, healthiest baby yet. At her five day check-up, my pediatrician pointed out what looked like a red brush-stroke on her back. I felt mortified that I had not noticed it before..it literally appeared out of nowhere. She said this is a hemangioma. I thought nothing of it...after all we had been through with Avery, surely we could live with a red stripe on Chloe's back.
Within the next two to three weeks, Chloe's brush-stroke grew larger by the day. Before long it was a huge mass on her back. We had been told not to worry, that they "go away on their own". So we took care of Chloe as we did our other babies. We swaddled her, put her to sleep on her back. We soothed her in her swing. When Chloe was exactly six weeks old I noticed that her hemangioma was turning dark in some areas. Within a few days it was oozing clear fluid. I rushed her into my pediatrician, and then to my dermatologist. He immediately sent us to the pediatric dermatologist at our local children's hospital.
Chloe's hemagioma had ulcerated from her being placed on her back and its rapid growth. It took months for it to heal. We had to use a topical medication with growth-factors called Regranex. Chloe's hemangioma was covered in sterile pads and her abdomen was wrapped in gauze from the time she was 6 weeks old until she was eight months old. She was prohibited from being on her back unless she was in the car to go to a doctor's appointment. At home, we strapped her onto a changing pad, on her belly when she could not be supervised on the floor. She slept in a Tucker Sling, which is designed for babies with reflux. It kept her from rolling onto her back at night. The first few nights when I put her to bed on her stomach I was sleepless with fear that I would wake to find her not breathing.
Chloe's ulcerated hemgioma: March, 2008
Chloe on her belly: under her clothes you can see her gauze wrapping
Last April, while on vacation in Florida, my son Andrew was playing with Chloe by the pool and her swim shirt came up above her hemangioma. Some other children nearby saw it an said: "Gross! What is that?" My heart sunk. Chloe did not know at 15 months what had occurred, but she would understand soon, and it would be years before her hemangioma would involute.
Serendipitously, upon returning from Florida, I had struck up a conversation with a woman whose neighbor's daughter had had a hemagioma removed by a local pediatric ENT physician. I did a little research on Dr. Mark Nagy and learned that in addition to being a well-known local ENT, he was also specially trained in hemangioma treatment. I made an appointment to get a consultation with Dr. Nagy, fully expecting him to tell me that we would have the best result if we wait for it to involute.
Instead, Dr. Nagy explained that a hemgioma of Chloe's size, that had
been so ulcerated, would require surgery following involution. Typically,
in the end, hemangiomas like Chloe's end up as a hanging sac of fatty
tissue covered by the scar tissue from the ulceration. This is usually
not an acceptable cosmetic result.
So, after doing some research, which included consulting Dr. Waner via the VBF website, we scheduled Chloe's excision for June, 1, 2009. It was a three hour procedure. I will never forget how I felt when I saw her in recovery, resting peacefully. It was OVER. Her hemangioma was gone and her back was flat. By the following day she did not even need Tylenol. Children can be amazingly resilient. By removing the tumor before she turned two, Chloe never developed any self-awareness of it.
Chloe's incision 6 weeks post-op.
The red marks in the incison are tiny remains of the edges of her hermangioma. In order to excise her tumor and close it without "tightness" in the surrounding skin, a few dots of the edges of the hemagioma remain. They are totaly flat and will fade in the near future.
Families need to be educated about their options. We want parents to be aware of the psycho-social effects of having a baby with a large hemangioma. I felt ashamed that I felt so strongly about a "benign" tumor that "would go away on its own". No parent should feel that way. It is very painful to look at your baby and see such an unanticipated growth. It can also be painful for siblings who have to explain what it is. Furthermore, it can be very damaging emotionally, for the child whose visible hemangioma takes years to fully involute.
My husband and I feel so grateful that we have such a talented hemagioma specialist in Western New York. We want all parents of babies with hemangiomas to be aware that there are options out there that your doctor may not know about. To treat a hemangioma is a decision unique to each child and each family. In our case, we couldn't be happier.
VBF has networked over 35,000 children and adults into treatment
Tyler Salvador and his twin sister, Shaine.