Disclaimer: I am not a medical practitioner. I speak only from my and my family's personal experience. Please, do not interpret anything I have written here as a medical advice. Every hemangioma is different, so is a child suffering from it.
Looking back at the first year and a half of Julia's life with hemangioma - until we got it finally removed - there are couple of things we would wish had happened differently. Leaving out the obvious one, that Julia would have never gotten her hemangioma in the first place, these are:
- The paediatrician who examined Julia right after her birth and saw the red "birthmark" should have told us that if we notice it growing we should contact a consultant and he should have recommended a vascular surgeon who specialises in treating hemangiomas.
- Our paediatrician who was seeing Julia for regular check-ups and with whom we have consulted the hemangioma in the first weeks, should have known what are the options to treat it or at least refer us to someone else.
- In the early stage we would wish to have met someone who would clearly explain all the pros and cons for treating the hemangioma with:
- laser
- steroids
- propranolol
- surgery
As Linda Rozell-Shannon pointed out in her article about Vascular Birthmarks: "What Every Parent Should Know", "topic [of diagnosis and treatment of vascular birthmarks] is barely covered in medical schools" and so was our impression about it after talking to most of the doctors who we have met.
If your child has a growing and suspiciously looking "brithmark", don't wait! Find a good doctor who will not only offer a treatment but also convince you why this type of treatment and not the other ones is better for your kid. If you are having troubles in finding a good consultant, check the Resources page and the foundations listed there which can help you out.
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Thank you for sharing your experience with this, my daughter has one on her shoulder it's just became ulcerated, she is only four months old. I am grateful to have read your story of your experience with hemangioma, and information and knowledge about the options available out there.
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