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!
Cesca (Mummy to Brielle)