Nicole was born on May 31, 2003. At 3 weeks old, we noticed a small scratch on her face, which we thought she’d done with her fingernails. Soon, that scratch turned into what looked like a blood blister. We then noticed it was growing rapidly day by day.
We became concerned at this point and scheduled an appointment with our pediatrician. He informed us that Nicole had a hemangioma. We were very fortunate in that we were diagnosed correctly. Our pediatrician recommended that we see a pediatric dermatologist. At this point, our journey began.
The pediatric dermatologist confirmed that Nicole had a hemangioma and put her on an oral steroid. He suggested we see a pediatric ophthalmologist immediately because her hemangioma was so close to her eye. The hemangioma continued to grow at a very fast rate even on the steroid. We were then referred to a plastic surgeon.
While all of this was going on, my husband and I were doing countless hours of research and asked about removal, since the hemangioma was very close to Nicole’s eye and about to start limiting her vision in that eye. We were completely caught off guard when the doctor became angry and said surgery at this point was “more for the parents and not the child.”
Since Nicole’s oral steroid wasn’t working, he changed her prescription to a different steroid. Each time she was given the steroid, she would become inconsolable and a day or so later, she spiked a very high fever, so we took her back to our pediatrician. After a quick checkup, they determined that Nicole needed to be sent directly to the hospital to have a spinal tap to rule out meningitis. Luckily, that test came back negative.
In our research on hemangiomas, we continued to come across the Vascular Birthmarks Foundation and a doctor named Milton Waner. We contacted the VBF and Dr. Linda Rozell-Shannon offered to call Dr. Waner for us. We had been sending pictures to Dr. Waner, but when we were admitted to the hospital, he called and told us to come to Little Rock, Arkansas as soon as we were discharged from Cook Children’s Hospital in Forth Worth, Texas. After three days at Cook Children’s Hospital, we were discharged and drove all night to Little Rock.
When we arrived in Little Rock, Dr. Waner informed us that Nicole was having a “psychotic reaction” to the oral steroid and we needed to wean her off immediately. He also told us that we needed to remove the hemangioma as it was encroaching into her eye socket and hindering her eye development.
Once we had weaned her off the steroids, we returned to Little Rock for Nicole’s first surgery. Dr. Waner told us that we would need a series of surgeries, as Nicole actually had a compound hemangioma, one on top of the skin and one under the skin. Removing it all at once would leave a huge void in her face, so multiple surgeries were needed. Her first surgery removed the mass under her skin and a small portion of the hemangioma on her cheek. Nicole was 5 months old.
In order for insurance to cover the surgery, we had to have it on an out-patient bases. So, after the surgery, about 50 or 60 tiny stitches were put into Nicole’s face, a drain tube inserted to remove the liquid draining into the area under her skin, splints were put on her arms so we would not pull out the stitches or the drain tube, and we were released to return to our hotel for the night. Needless to say, it was a very long night. The next morning, we returned to meet with Dr. Waner. Nicole’s face was black and blue and extremely swollen, but we were comforted when Dr. Waner told us the surgery was a success.
A couple of months later, we were back in Little Rock for Nicole’s second surgery. It was very similar to the first. After her second surgery, Dr. Waner informed us that he was moving to New York City, but assured us that the doctors in Little Rock were quite capable of taking care of Nicole moving forward. We decided that Dr. Waner was her surgeon and followed him to New York City where Nicole had 4 more surgeries, all before the age of 15 months old.
After her last surgery, the hemangioma was totally removed, and we could finally breath – or so we thought. Because her hemangioma had affected her eye, we continued to see the pediatric ophthalmologist. A couple of years later, during a routine check-up, it was determined that Nicole was “legally blind” in her eye and her vision was 20/400. We were told that it could be worse, but 20/400 was as high as they went. We called the VBF and it was suggested that we return to New York to see Dr. Waner and his team there, which we did. After a thorough exam, it was determined that Nicole’s eye was physically fine, we just need to help it develop. With months of exercises and patching, the eye was nearly normal. Nicole still needed glasses, but she was no longer legally blind.
We are extremely grateful to the Vascular Birthmarks Foundation. Without VBF, we would not have received the guidance and the expertise that we did. Nicole is now 15 years old and about to be a high school sophomore. We still remain huge supporters of the Vascular Birthmarks Foundation and have joined the Board of Directors to help ensure that parents like us continue to get the support they need.