My daughter was born of an uncomplicated, scheduled c-section in December of 2010. She was perfectly healthy from head to toe, and pretty darn cute as well. About 6 weeks later we noticed a very small bump above her left eye. Assuming her older brother had probably thrown a toy at her, we didn’t give it much thought. After a few days the bump was still there, and though we almost convinced ourselves it was purely imagination, we thought it was getting bigger. We visited our pediatrician who, after seeking a second opinion within the practice, concluded that it was probably simply a cyst. We were given antibiotics and asked to be seen again after a week. During the week the “cyst” began to change color to a reddish purple and grow even more. Our daughter’s tiny eye began to close under the weight of the growth. When we saw our pediatrician again, he immediately said that he had changed his mind, what we were looking at was definitely an infant hemangioma.
The Mayo Clinic defines hemangioma as, “a birthmark that appears as a bright red patch or a nodule of extra blood vessels in the skin. It grows during the first year of life, and then recedes over time. A hemangioma is usually benign and isn’t associated with other medical conditions. Most often hemangioma doesn’t require treatment. By age 10, a child who had a hemangioma in infancy usually has little visible trace of the growth.” Our doctor described it as such remarking that most hemangiomas are simply left alone to grow and then shrink on their own. He did, however, want our daughter to see a specialist because of the hemangioma’s close proximity to her eye.
When we returned home from the doctor visit we made the classic mistake of looking up hemangiomas on Google images. We saw numerous horrifying pictures of tiny babies covered in large, bulbous, bright red tumors. Our doctor had already scheduled the visit to our nearby Cincinnati Children’s Hospital Medical Center. The hospital operates a Hemangioma and Vascular Malformations Clinic. We were set to visit the clinic as well as the ophthalmology department because of the location of the hemangioma.
We were assured by doctors at the clinic, (an oncologist, an ear, nose and throat specialist, and a dermatologist all saw our daughter in one office) that the hemangioma was benign, however with it being so close to her eye, it would probably need treatment. The ophthalmologist detected astigmatism in our daughter’s eye and began telling us about treatment options. Steroids, injections directly into the site of the tumor, would be the most likely course of action. The steroids would stunt our daughter’s growth and development leaving her tiny and underdeveloped for about a year. After stopping the treatments, around one year, she would quickly catch up to “normal” development for her age. He also explained that surgery is rarely an option for removal of infant hemangiomas because they are basically a blood filled tumor and the risk to the welfare of the child is simply too high.
The idea of putting injections into my daughter’s tiny eyelid was horrifying, but we were thankful that the diagnosis was not any worse. After the ophthalmologist and hemangioma clinic doctors consulted with one another we were told about another suggested treatment option: Propranolol.
The drug Propranolol has been around for decades. Primarily a blood pressure medication for adults, the drug was discovered to shrink infant hemangiomas by accident. During a study of infants with blood pressure issues, who also happened to have hemangiomas, doctors realized that the hemangiomas were shrinking. Thus began a new treatment for hemangiomas, one that has only been around for a few short years.
We were admitted to the hospital for a 48 hour stay. Our daughter was given heart tests to make sure the Propranolol would not effect a preexisting condition of her heart. While Propranolol has been around for a long time and is considered to be very safe, it does affect both blood pressure and blood sugar. Our tiny daughter, now 7 weeks, could easily have an adverse reaction to the new medication. She stayed in the hospital for 2 days so that nurses could check her blood pressure and blood sugar every few hours. That 48 hours was incredibly long. It was painful seeing my daughter’s tiny fingers pricked for blood samples and impossible for any family member to get much sleep. Thankfully the staff at Cincinnati Children’s Hospital was incredible in every way during our entire stay.
So at 7 weeks of age, our daughter started on Propranolol. She was to take the drug, in a liquid form, every 8 hours. Additionally, she had to eat something every 4 hours, to ensure that her blood sugar remained stable. This meant that even as she started wanting to sleep longer periods at night, we had to wake her to make sure she ate at least every 4 hours.
Our daughter’s response to the Propranolol was amazing. Her hemangioma had shrunk visibly before we even left the hospital. Over the course of the next 9 months her hemangioma all but disappeared. Though we could see a tiny bit of red beneath the fine hairs of her eyebrow, no one that wasn’t told about the hemangioma would have been able to detect it.
Our daughter experienced no majorly ill side effects from taking the Propranolol. We faithfully fed her as often as required by our doctors. She did have quite a bit of sleeplessness. Older children on Propranolol are thought to experience increased nightmares and even night terrors. Our daughter was obviously too young to communicate what she was dreaming about but she often woke screaming as though scared or hurt. She did not sleep through the night (other than a handful of “flukes”) until she came off of the drug.
At almost 14 months old, our sweet little girl has been off of the Propranolol for 2 months. Her hemangioma has not even begun to reappear. Although her ophthalmologist thinks she may need glasses at an early age, she otherwise has no ill effects from the hemangioma or the drug treatment. According to the doctors, our daughter did respond remarkably well to the treatment, better than almost all of the prior cases they had treated. Most babies begin being weaned from the drug very slowly around 12 months of age. We were fortunate to have her totally off of the drug by the time she reached her first birthday.
While the research surrounding the treatment of infant hemangiomas using the drug Propranolol is limited, our first hand experience proved to be nothing but positive. The small drawbacks of treating our child with Propranolol were far less severe than the negatives of steroid treatments. Additionally, leaving the tumor untreated could have resulted in loss of eyesight in the affected eye. Propranolol was our best option, and thankfully had a better-than-imagined outcome for our precious little girl.
Feel free to comment on this article if you have questions regarding our experience with infant hemangioma and treatment with Propranolol. Our experience was a mostly positive one and I hope to offer encouragement and support for other parents experiencing this with a child.
Cincinnati Children’s Hospital