The hemangioma came into our lives the second week of our son’s life. It all began when a red line suddenly appeared under his leſt nostril and a few red spots on his leſt hand. The phenomenon grew rapidly. Within a month, his hand became like a boxing glove from swelling (his fingers, because of the swelling, were bleeding and were running pus), while the leſt side under his nostril down to his mouth had a huge deformable tumor that blocked his nostrils completely and was also frequently bleeding. Not to mention that his dimple and leſt lip were gone. The shock was immense, the tears were running dry day and night, the sense of complete despair was permanent.
Today, aſter almost 5 years and numerous visits to doctors all over Greece and abroad (not in person but through friends doctors working abroad, who had the record of our case and could reach the experts instead of us for an initial exploratory meeting) I would like to communicate to the parents who deal with the same problem as we did the following messages:
1) PARENTS, KEEP CALM:
Cry all you want, alone or in company of friends. But in front of your child being a rock is the only way. Children, intuitive as they are, understand everything. Many of them suffer because of the hemangioma effects, no need to sense your despair as well. You must never forget that you are their primary source of strength. You must also collect your pieces each time you visit a doctor. If your mind is not clear, how will you understand what the doctors are saying to you so that you will:
a) do your personal research and
b) make the right decision?
2) RIGHT CHOICE OF DOCTOR:
We started off with the doctors since he was 39 days old. We never counted the cost, as long as they were, theoretically speaking, the experts on the subject. Don’t get impressed by the titles and the studies. We visited 20 doctors and they suggested 20 different ways s of dealing with our problem. What matters is the experience and the morals of the doctor. We met doctors who clearly wanted to turn our child into a guinea pig, others who saw us as another case among many and suggested treatments mismatching the age of the patient and the possible severe permanent effects, others who wanted to play smart and refused to answer our questions saying that they are the doctors and not us. Don’t get fooled. You have every right and mostly every obligation to evaluate what they are saying to you and to ask for clarifications. You cannot trust the treatment of your child to arrogant people. Always ask for photographic material as a sample of their work. You have to ask for the possible effects that might arise as a result of the suggested treatment. If you don’t feel confident, ask for alternatives or time to consider it and start immediately a research on what is suggested or look for another doctor.
3) PERSONAL EXPERIENCE:
Whatever the suggested treatment, no matter how good the doctor appears to be, you are obliged to double-check what they tell you. The internet might come very useful, mostly if you visit foreign websites because there, apart the fact that there are special institutions and research centers specializing in the hemangioma, doctors that handle them post articles and mostly specimens of their work (with the “Before”and the“Aſter”) on their personal websites. You will also find many research papers and research reports of doctors on particular methods of treating the hemangioma but also information on various medication that can be suggested (you must be extremely cautious regarding that matter because some medication might cause neurotoxicity or spastic hemiplegia!!!)
4) PATIENCE AND IMPASSIVITY:
Treating an hemangioma demands more time than we us parents would like. In some cases, it requires one or two surgeries, in others a long lasting treatment with medication, in others a combination of the two. Patience. Hard as it may seem, stop paying attention to other people’s gaze and words. Make up your minds. We are Greeks, with no social education and sensitivity. Stay calm, strong and prepared to protect and keep away from the child any weird look or rude behavior. What matters is that the child doesn’t see the pity in your eyes. You are the one he gets his reassurance from, if he sees that you are ashamed he will be ashamed of himself too. And when he reaches an age where you can communicate,
give him an explanation to his problem that he will be able to handle. Consult on that matter your doctor, your pediatrician or his teachers.
5) DO NOT FEEL GUILTY:
There is no point to it, because the cause of the hemangioma has not yet been found. So why blame yourselves? You get nothing out of this attitude and you might also poison your relationship as a couple.
THERE IS A SOLUTION. MEDICINE IS EVOLVING, NEW TREATMENTS ARE DISCOVERED. GREECE HAS VERY COMPETENT DOCTORS WHO REALLY CARE AND CAN HELP. YOU NEED TO RESEARCH, TO HAVE STRENGTH AND A GOOD JUDGMENT WHEN IT’S TIME TO MAKE A DECISION.
Disclaimer: The views and opinions expressed in this article are those of the authors and do not necessarily reflect the position of this website.