newborn with venous vm

[bdubray]

My son is 9 weeks old and was born with venous vm of the leg, butt, scrotum, and penis. The MRI shows that it is very extensive...the most extensive case the doctors have ever seen. The Pediatricians at the hospital didn't know what it was and had never seen a case like this before. It is very deep and they are worried that it will affect the muscles. WE meet next month with the Dermatologist, Vascular Surgeon, Plastic Surgeon, Radiologist, Urologist to have them all examine him together and try to come up with a plan of action. Does anyone else have any experience with a Venous VM? Thanks

[bdubray]

Or does anyone have a doctor they would recommend? WE are located in MO and are at Children's Mercy right now.

[dancermom]

I am so sorry to hear about your son's VM. I recommend you join AVMSurvivors.org, where there are well over 500 members with non-brain AVMs. I also recommend you contact Robert Rosen, who is one of the VBF experts on this website. Or you can try to contact Patricia Burrows, who is at Milwaukee Children's Hospital. Or Waner and Berenstein in NY. Or Gresham Richter at Arkansas Children's. Or Wayne Yakes in Colorado. Your son must see an expert who has treated dozens of AVMs and VMs -- the local hospital is most often not the right place.

I am not sure that any of the doctors will recommend treating a baby so young , as the vessels will be tiny and difficult to map out with an angiogram or to embolize. A delay of a few years may in your son's favor, as treatments continue to evolve and improve. In the meantime, you can learn about VMs and their treatments and meet other parents whose children have them at AVMSurvivors.org

Best wishes to you and your son!

[dancermom]

Hi, bdubray. I hope you check in soon and let us know how you are. It is easier to go through this when you feel supported.

[Lamilla45]

My father is baby's doctor, he have definitely great knowledge of this.. I'll ask him or even I suggest you to meet him, as soon as possible. PM me if you agree.