The importance of Education - How important a site like this is for any parent! - Vascular Birthmarks Foundation Forum
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  #1  
Old 11-13-2008, 05:41 PM
BriellesMum BriellesMum is offline
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Default The importance of Education - How important a site like this is for any parent!

Wanted to give a quick update. We took Brielle to see Dr Honig at CHOP and as expected, we didn't get much from the visit. In fact, we were a little upset at some of his remarks and overall I felt like I knew more about Hemangioma's and all treatments available. As expected, he ultimately suggested we 'wait and see'. Again, I didn't disagree with his advice, but I was offended by his insinuation that this was more an 'issue' for us and that we wanted/expected 'a perfect baby'. At one point he told us to stop looking at the H and look at her, and love her for who she is, not for who we wanted her to be!! I was sooo offended! How dare he insinuate that we don't love our baby no matter what!! We're both well educated, smart professional people, we certainly didn't need to hear such a comment! Ugh!!!

We're attending the VBF Conference on Nov 15th and hoping to see Dr Waner during a clinic appt. It will be interesting to see what he says, to learn more about all the treatments available, and more importantly to meet other parents who understand what we're feeling. One things is for sure, after learning more (especially from this and other support sites), we know we are one of the fortunate ones....Brielle's H is small and not life threatening. We are blessed that we have a heathly, beautiful and smart child! Our goal from the beginning was to educate ourselves as much as possible and learn as much as we could from BOTH sides of the issue - the wait and see and the proative/surgery.

Thankfully, we've also noticed that it has stopped growing and maybe even started shrinking? There is some graying....we think? Wishful thinking??? She will be 5 months old Nov 17th. Nevertheless, we will still attend the conference, learn as much as possible and get other opinions. After educating ourselves (mostly through this and other support sites) we were leaning towards the 'wait and see' approach anyways.

If there is something I have learnt from this experience, it's that no matter what size the H may be, ALL parents should become educated and more importantly ALL Doctors should become MORE educated on Hemangiomas, especially about ALL the treatments that are available. This isn't about a 'cosmetic procedure' and wanting 'a perfect baby'. It's about wanting the best thing for your child and doing everything possible to attain that (through educating ourselves). This foundation is a terrific tool for any parent out there. I wish more Doctors would read this site to have a better understanding of what the parents are really feeling and that sometimes it's "not just a birthmark".

Thank you to all that have helped me through this process!

Thank you for this and all support sites!
Cheers,
Cesca (Mummy to Brielle)
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  #2  
Old 11-13-2008, 11:49 PM
BamaMama BamaMama is offline
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I really cannot believe what some people and Doctors say. Almost everyone I talk to tells me that I shouldn't "mess with it". Like I am bothered by it being there. No- I am bothered by the fact that it was ulcerated and had an infection in it, and my baby was in pain. I just hate it when people seem to think they know what we are thinking.
Good luck with your daughter!
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  #3  
Old 11-14-2008, 01:59 AM
AubrieB AubrieB is offline
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Location: Huntsville, Alabama
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I completely understand where you are coming from. My son Hollis just had 3 of his 8 removed by Dr Buckmiller. I was actually feeling sort of bad because his were relatively small and I know others have ones that are life threating. She told me that my son is just as important as any other patient that walks into her office and that there is nothing wrong with me wanting something that is abnormal be made to look as normal as possible. This was so refreshing to hear after what the other Drs had said. Hollis' hemangioma on his scalp had ulcrerated and become quite infected and one plastic surgeon told us to just put neosporin on it because is would more than likely go away by the time he was 10ys old.

Education is the key. I found this site and found the Dr that best fit our family and I haven't looked back since. You have to do what you feel is best for your child.
Good Luck!
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Old 11-14-2008, 06:15 PM
Sam's Mom Sam's Mom is offline
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Hi there -

I don't want to be a troll here, but I have to point out that loving your child no matter what isn't related to being "well educated, smart professional people." I know you didn't mean to say that people who weren't professional/smart/well educated don't love their kids unconditionally but I just wanted to point out that everyone can say things that might be misunderstood some times.

Aside from that, I think you're 100% right on about the importance of education and being an advocate for your child. Your daughter's very fortunate to have you as a Mom.
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