"A Mother's Perspective"
My husband John and I had our daughter Meghana Joy in March 2015. She came out after 4 long days of labor - ended up having a C-section - and she was and still is just perfect. We noticed immediately that she did have "something" on her face, but we assumed it was just a bruise and it would go away.
I made an appointment with a pediatric dermatologist in August of 2015, and he diagnosed her with a port wine stain - not Sturge-Weber related. After that appointment, my husband and I started our search for treatment/support/etc. We were put in touch with Dr. Nelson and the VBF through a friend of a friend who also has a port wine stain. Needless to say, that information has changed our lives. We were lucky enough to be able to attend the VBF Annual Conference in Irvine in Oct 2015 and have a clinic visit with Dr. Nelson the day before the conference. He was absolutely wonderful and spent almost 30-40 mins with us. 30-40 MINUTES. I was shocked. He put our fears at bay, answered all questions, looked over notes from other physicians and really helped us find our path.
We were happy to hear that we could start treatment at University of Michigan with Dr. Jeffrey Orringer and not feel like we had to travel to California every 6-8 weeks! We would have done it, but driving 90 mins each way is much easier for all of us. smile emoticon Meghana is an absolute rock star. She only cries for a few minutes after the laser treatment - we do not put her under anesthesia - and her daddy stays in the room with her. I just wait right outside and am back in the room after the 2 min treatment to hug and kiss away all her tears. We have seen some changes in her birthmark since we started the laser treatments.
I want Meghana to understand when she gets older that we decided to do the treatment to help limit or eliminate completely the secondary complications that may arise from her PWS. Our goal is to raise her as an empowered and confident woman and that her birthmark makes her unique and beautiful inside and out.
It is so important for me to let you know that I thank God every day for you and the VBF. It is so comforting to know there are people out there just like us and who are willing to share knowledge and resources as much as you do. Hearing you say on the webinar, that if someone can't afford the new book you are writing, you'd just mail one to them just really struck a cord in me. I love how the entire VBF community is just so open and ready to share everything with everyone. I don't think there are a lot of foundations like that.
I am hoping to bring new life to the Michigan "chapter" of the VBF! I organized a 5K called The Purple Polka Dot Race - for obvious reasons (the dots after Meghana's laser treatments). Our first race was Aug 14, 2016 at a local park.
There's a very good chance my friends and family are all sick of me talking about the VBF, but I also know that people are learning a lot and are really interested in vascular birthmarks in general.
Thank you again. I don't know how else to say it and it sounds so simple, but I don't know where we would be without the VBF.
Jody, John, and Meghana Lee