Some things I hadn't even considered

I will admit that I am usually a very forgiving person.  I don't tend to hold grudges, and I try to see the best in most situations.  That said, I also think that I may have been a bit naive on this one.  

 With this article debate that I have mentioned in my previous 2 posts (that involved some false and irresponsible statements about certain medical procedures involving vascular birthmark removal...specifically Port Wine Stain removal), I chose to take the author's apology at face value and that was that.  I wasn't really thinking about the much bigger picture, and the impact that such statements can make on the care a child may (or may not) receive.  This letter to the author was so well written (and surely brought up points that hadn't even crossed my mind).  I'm proud to have an advocate like Corinne Barinaga in my daughter's corner.

This is what Corinne had to say to Mr. Graham (It is a little long, but it is good.  Sorry for that, but PWS birthmark education is one of the primary missions of my blog...who knew a blog could have a mission!?  It won't hurt my feelings if you have NO interest in reading it!):

Hello, 

I know you have received many complaints about the phrase used in reference to treatment of PWS as "ridiculous."  I read your reply to one person and appreciate your statement of correcting the intention.  However, this area is much more complex than to categorize cases by appearance alone.  There are some points I would like to bring up that might help you understand why you may see the backlash.  

For the past 5 plus years I have helped thousands of families find adequate help and support from their primary care physicians and insurance companies.  After my son was born with an extensive hemangioma (benign vascular tumor) that covered the entire right side of his face, ear, neck, scalp, back of his neck and eye I felt compelled to help those that followed me.  My son was at risk medically for heart failure, brain abnormalities, eye malformations, etc.  Initially his primary care physician gave me the typical..."It will go away in one year".  Thankfully we followed our instincts and found a specialist that knew the risks of hemangiomas.  Because of prompt intervention followed by multiple laser treatments, my son has no medical concerns and the hemangioma is for the most part gone.  Had he not had intervention he would have faced major reconstructive surgery with large scars or significant disfigurement if left alone, not to mention the medical risks.  I saw a grave misunderstanding by the general medical community, general public and insurance companies in regards to the field of vascular "birthmarks" (aka vascular tumors and malformations or anomalies), so my mission is to provide support, direct people to appropriate physicians and provide information and educational tools.  Very few people know the drastic side effects and medical concerns.  We've had babies die while waiting for approval to see a specialist.  It is a lot more than a birthmark we are dealing with.  While I appreciate that you agreed there should have been a distinguishing statement between medically necessary treatments of "birthmarks" vs. cosmetic treatment, it isn't as easy as being able to look at a lesion and say "this is not serious" or "this one is serious".  Only a trained specialist (with tools such as MRI, biopsy, experience, etc.) can make this call after evaluating the patient.  There are syndromes and health concerns that relate to these vascular malformations/tumors that aren't often visible initially.  The risk is that when information is out there that birthmarks are "no big deal, only cosmetic" people don't receive needed evaluation to determine if their case requires intervention or if intervention would improve the final results.  

There is an enormous spectrum of cases and types of vascular tumors and malformations.  One of the largest problems we face is misdiagnosis.  Misdiagnosis is serious as it leads to improper treatment and expectations for the patient.  Another major issue we find is the misinformation and attitudes communicated to patients about birthmarks from the medical community, insurance companies and even in the media.  I have seen cases that may not appear serious, but ended up requiring emergency intervention.  The spectrum includes many cases with underlying medical issues not caught in time, all the way down to the very minor inconspicuous spot.  The problem is when the attitude out there is that this is a cosmetic issue...people don't seek proper information SPECIFIC to their case.  For example, a tiny red dot on an infant's belly, then two weeks later another one appears somewhere else and so on.  The parent and often many primary care physicians dismiss it as benign and it will go away over time.  However, there are serious life threatening conditions that can be associated with even the smallest inconspicuous birthmark.  When we see statements made in the media that are not accurate or support benign neglect, it undermines the progress we've made in the field.  People need to know that all vascular lesions need to be evaluated.  The majority of cases don't require further examination, but we can't put a blanket statement other there that this is cosmetic.  You are putting people at risk by misleading the patient, parent, sometimes even primary care physicians and insurance companies to believe birthmarks are not medical concerns.  You can't make the call on medical necessity until after a patient is evaluated by a specialist.  PWS or Capillary Malformations as referred to in the article have major underlying medical concerns.  I am sure you've recently been informed of these risks as a result of this statement.  

I also take issue with the word cosmetic.  The comment I've heard frequently, "Cosmetic  surgery is for nose jobs, breast enhancements, etc.  where treating a vascular lesion is reconstructive surgery, not cosmetic."  You are dealing with something that is abnormal and doesn't belong.  It wasn't very many years ago that a cleft lip/palate was considered cosmetic surgery.  It is accepted now as reconstructive to fix a birth defect.  

Thank you for your time.

If you would like more information about vascular birthmarks, I would be happy to point you to resources.  

Regards,

Corinne Barinaga

VBF Administrative Director

VB Support Group Manager